Amniocentesis
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2010 - 2013 Recommendations
Amnio - questions about experiences HELP!
August 2010Here it goes... I am almost 20 weeks preg. with 2nd child and will be 40 when baby is born. Four years ago, I had an intervention heavy labor at an SF hospital, then a frustrating c-section for a malpositioned head with first birth. - very healthy baby though. Exactly a year ago, I internally bleed for 5 hours in an ER of another SF hospital before a sonogram was done (!)and had to be transferred for a huge blood transfusion and surgery for a ruptured fallopian tube from an ectopic pregnancy.
We tried for a little while for another baby, then kind of gave up. Miraculously, the egg that I became pregnant with currently made its way from my UNattached ovary (they had to remove the fallopian tube) into my uterus and now I am happily expecting and hope to do a VBAC.
I did the 1st trimester combined screening at UCSF and it came back SCREEN NEGATIVE. Nucheal was very good at U/S. Midtrimester risk for Down's sydrome being 1 in 180, lower than cutoff which is 1 in 100. BUT, they recommended a 2nd trimester blood specimen, which I just had done last Monday.
Friday afternoon, I get a phone call from an unknown UCSF worker telling me to speed up my appointment for 20 week sonogram and speak w/ genetic counselor because, according to second blood drawn, my risk for Down's was now at 1 in 110!
I am set to have a more detailed sonogram, but needless to say, I am a nervous wreck. I know these are only screenings and we are considering an Amnio.
BUT, I have had so many bad hospital experiences I am finding myself very untrusting of their numbers and data.
So many questions... has anyone had an amnio after a c-section surgery? (that incidentally left a lot of scar tissue) I am really worried about complication from amnio.
Do my combined screening numbers sound incredibly high risk for a 40 year old? I forget what my results were with first baby. Has anyone had numbers like these and opted out of amnio? We would terminate if Down's was present, but HOW accurate are amnios? I am all torn up right now and fearful of hospital interventions.
I have to begin work as a 4th grade classroom teacher in 3 weeks. Has anyone ''rushed'' their amnio results? My friend in NY had amnio results in 3 days from Lennox Hill Hospital. Has anyone been able to do that? Worrying like crazy
Try not to worry. I would hope a genetic counselor talked you through the results and gave you the statistics and some perspective. You'd need to confer with your genetic counselor, but I think it's very common to get a borderline result like that when you're in your 40's. I can't speak to that, or your prior medical issues, but I would say that you should get yourself in to see Dr. Goldberg at San Francisco Perinatal Associates. (415.202.1200) He's a reknown and respected doctor in the field. He did an amnio on me for my first pregnancy, which, unfortunately was trisomy 18. For my second pregnancy he did a CVS. For my third pregnancy, my early screening results looked promising, so with his support, we opted not to do any invasive testing. It sounds like you need to be in wonderful, capable, experienced hands - and that's what you'll find with Dr. Goldberg. Perhaps you could do a consult where you could discuss your medical history first. As for the rush-results, there is something called a 'FISH' test where they only test for, I think, the 3 most common trisomies. It can be completed in 3 days, whereas the regular test takes about 10 days.
Call SF Perinatal Associates. You'd be in very good hands. Also their website has a lot of useful information. I found their counselors to be compassionate and helpful as well too. http://www.sfperinatal.com/ Good luck. K
1:110 for a risk is not very high in a 40 year old. If you are concerned about interventions, you could wait until the 20 week ultrasound and make sure everything looks fine and then decide whether or not to get an amnio. You can do something called FISH testing, which will give you preliminary results about Down Syndrome in about 2-3 days (but you may have to pay a few hundred dollars for it, depending on your insurance). Chances are very small (less than 1%) that anything is wrong. It sounds like you have been through a lot of trauma, so maybe it is best to just let things be and trust that everything will be fine. Good luck!
At 1 out of 110 you have a LESS THAN ONE PERCENT chance of having a baby with downs. Really, I'd skip the amnio altogether if I were you. For one thing, if you're pregnant with a girl, you will have increased amounts of the estrogens that are tested for in the screening (which will then show up as an ''increased risk'' for having a baby with DS). I think my risk was about the same, or maybe 1 in 120 or something like that, and the nurse apologized to me over the phone and said to schedule an amnio. I laughed and told her to forget about it. I didn't do the amnio and gave birth to a perfectly healthy baby girl. Don't let this worry you, hospitals make a much bigger deal about these things than is really necessary. No Amnio, Thank You!
Fast results cover the most common trisomies - T21, 18, 13 and the sex chromosone. You still get complete results. Usually these are ready in 48 hrs, depending on timing of the amnio app't. If I recall, 1 in 100 is about what your odds are at 40 so 1 in 110 acutally sounds ok. The much bigger issue is how you would deal with the news of a trisomy. over 70% of babies with T21 (Down Syndrome) are born to women under 30 because they don't to screening. We decided to terminate a pregnancy when I was 37 for Down syndrome. It happens, you just don't hear about it much. Hope all is well
I am so sorry that you are experiencing this...I went through something similar 5 years ago and I think my big piece of advice would be to make sure that you attend some kind of support group or get some grief counseling. You and your partner may grieve in very different ways and this can be very hard on a relationship...My husband and I didn't take care of our emotional well being, neither individually nor as a couple, and we suffered for it.
Oh yes, and like you I wanted another child (this was my second pregnancy) and felt rushed due to my age. So, my second piece of advice is to wait a bit before trying again. You need time to heal emotionally (your body will be fine). I brought a lot of anxiety into my next pregnancy because I didn't come to grips with my feelings of guilt, loss, etc. first.
Hang in there. I wish you and your family the best! Feeling your pain
I was 38y.o. when I had my 2nd child. I had amnio with both pregnancies. 1st baby delivered by C-sect. due to being inverted. 2nd baby - VBAC with a midwife. No problems at any point. Both kids born at Kaiser-Walnut Creek. But, every one and every pregnancy is different. Good Luck
Like you, I had high-ish risk for Down's, and did an amnio because it is the only thing that gives 100% surety, and I didn't want the stress of not being certain, whatever our decision was going to be. We had the results rushed, and the counselor helped us with this: she gave us all the jargon-y info before we had the procedure, while we were still in her office, so we could call the insurance to make sure they would cover it (otherwise hugely expensive). Then we had the procedure, which was not fun, but done by people who had done thousands, and were very experienced. Baby boy is three weeks old and very healthy, and no Down's. Good luck! Anon
You poor thing! When it came to being pregnant, it always amazed me how little control we had over the most monumental thing. I should first tell you I am married to a doctor (or was anyway) and when I had my first son the initial test came back 1 in 5500 risk for Downs. With my second son...at the age of 34, the test showed a risk of 1 in 500. So, we did a high resolution ultrasound. When that was ok, they told us, our odds doubled to 1 in 1000. With my 3rd son, at the age of 38, I was told to go straight to amnio. and genetic counseling was mandatory due to ''advanced age.'' I was freaked to learn the typical risk for Down's at 38 was 1 in 177. (But there are a crap load of other disorders the lovely genetic counselor can fill your head with as well.)
Have you had a HIGH RESOLUTION ultrasound read by a professional?? There are clear signs they can look for on the developing fetus. It sounds like your pregnancy is a miracle and I think you should be as cautious as possible when it comes to taking any risks (including those associated with amnio.)
HERES TO A HEALTHY BABY! Incidence of Down Syndrome with Increasing Maternal Age Maternal Age at Delivery Risk at Term 32 1/725 33 1/592 34 1/465 35 1/365 36 1/287 37 1/255 38 1/177 39 1/139 40 1/109 41 1/85 42 1/67 43 1/53 44 1/41 45 1/32 46 1/25 47 1/20 48 1/16 49 1/12
Mama of 3 Boyz
At 43 I unexpectedly got pregnant. I had gotten married quite late and we had been doing infertility treatment from 40-42, which resulted only in a few early miscarriages. Our nuchal test was good but our blood test gave us a 1 in 7 chance of a Down's baby, which was much, much higher than the 1 in 35 odds for a 43-year-old and thoroughly freaking us out.
We did amniocentesis and the results were normal for Down's. Amnio is definitive for Down's as the extra chromosome can easily be seen, but the procedure only tests for a few gross genetic abnormalities, and very small ones (an intrachromosomal deletion, point mutation, etc.) can't be detected. So I was very, very anxious until the baby actually came. Plus she mostly stopped moving in the last few weeks so I went in for tests several times a week to convince myself that she was not going to be stillborn. I gave birth two weeks shy of my 44th birthday. And she was fine, completely normal, and now she is an extremely bright and active six-year-old! I hope everything turns out well for you too. anon
I have had three amnios (ages 36, 38, 41) and one CVS procedure (@45). All four children are genetically normal and healthy. I am a needle-phobe, but other than that have no bad hospital experiences. I did, however, have a similar situation in that before this last baby, I had an ectopic pregnancy that ruptured upon excision resulting in the loss of the tube. This last pregnancy was like yours in that the remaining tube somehow caught the egg from the other side. Miracle babies!
About your specific questions on your ''chances'', etc.... I feel it is important to remember that 1 in 110 translates into less than 1% chance. This means you have better than a 99% chance of nothing being wrong. It is also useful to know that you would terminate should Down Syndrome be found. Since this is the case, I would ABSOLUTELY find out for certain if you are or are not having a healthy, genetically normal baby. The results are very, very, very (add about a hundred more verys in there) rarely incorrect. The chances of a problem as a result of the testing are very slim. Especially if your doctor is performing the procedure often (a lot of them do and are very highly skilled in it). As far as rushing results... that may result in results that might not be as accurate, but I am not sure. I know that it takes a while for the culture to grow enough cells to really tell for sure... to get a good sampling and count. Also, if they see something out of the ordinary, they usually do what they can to speed things up. If it looks good, usually you wait the long 10-14 days. Anyway, that is what they told me
(((hugs))) and peace for you in all of this. another older mom
I did have amnio twice, the second time at 40 for my baby born when I was 41. Everything went fine, although I had never had a c-section so I can't tell you about that. One thing I can say: the numbers are in your favor. Doesn't it sound awful when they say you have a 1 in 110 risk of Downs? Wouldn't it be nice if they told the exact same statistic to you in another way: your baby has a 99.1% chance to be healthy/not have Downs. Doesn't that sound better? That's what my husband and I would do when they told me the scary 1 in whatever numbers: we would convert it to what was the chances of having a healthy baby, and that always sounded better. The odds are way way way in your favor. Relax, get the amnio, and have a wonderful and healthy pregnancy. Andi
I developed a severe infection while attempting a home birth with my first child. The result was a C-sec. and 4 days of intravenous antibiotics. which I was told probably cased uneven intravenous scarring. 5 years later when I was pregnant again, and close to 39 years old, they did an amnio because of concerns about my baby due to my advanced age. The amnio ( having a needle inserted into my uterus) made me feel very vulnerable and scared, but all went well and when the time came,I had a healthy beautiful boy just as the test had predicted I would.
i would do the amnio. you said you would terminate if it is downs. the only way to know for sure if it is downs is with an amnio. they look at the dna and will be able to see any problems with the chromosomes. if you don't do it you will spend the rest of the pregnancy thinking about it. sorry to say but the nucheal can be totally fine but the baby can still have chromosomal issues. bloodwork can also be wrong, but it is not a very good thing to go by. so many false positives or negatives. the only way to know for sure is with the amnio. i didn't do an amnio with my pregnancies--i did a cvs, similar procedure, just done earlier. i am so glad i did them because we did find out one of our babies had a chromosomal abnormality. we terminated. horrible. but it could've been so much worse. i understand your fears about the procedure but it is pretty straightforward. if you go to a good dr in the bay area (sf perinatal is amazing--dr's there pioneered the procedure and have very low miscarriage rates and results come back soon--in a week or two) things will go smoothly. definitely express your concerns to them. but i would recommend doing it due to your age, the bloodwork (although it isn't a good thing to measure by) and your thoughts on terminating if there is an issue. good luck--it is such a tough decision. -been there
I had an amnio for my last pregnancy as I was over 35. We already had children and wanted to be prepared for any complications and have the option to terminate if we felt the necessity. I was very nervous but it was fine. You first meet with a genetics consultant who tells you what they can learn from the test. You can ask questions. Next, you have an ultrasound and the technician can tell you the sex of the baby should you want to know. This is a standard ultrasound where they will check the heart, the kidneys, etc. They will print out photos of the baby. If you had to have a full bladder, they will now let you go to the bathroom. Lastly, the doctor comes in and with the technician showing the position of the baby, the doctor will insert a big needle in and take a vial of fluid. This only pinches as it goes in and looks worse than it feels. The surprise for me was that the doctor had to push so hard to fill the vial (not with the needle, pushing on the vial) at one point I thought she was going to climb on the table with me. The vial also took longer to fill than I anticipated. When all is done you get dressed, go home and get back in bed. Give yourself a nice day to relax. You can't lift anything heavy for a week or so, they will give you all the details.
A week or two later they will call and leave a message if you aren't home. I believe I had to call them back, not because anything was wrong, but they want to check in with you. all was well
2007 - 2009 Recommendations
False Positive Amnio?
Dec 2009It's a far shot, but do you know of anyone that had a false positive amnio result for Down's Syndrome? I realize that I seem to be foolishly clinging to crazy odds, but it doesn't say anywhere that the amnio is 100% positive. So I'm wondering. And of course, hoping. The thought of having a child with Down's fills me with fear, despair, sorrow. But I just can't terminate. hoping against hope
Yes- I do know of several women who had positive amnio and then gave birth to baby without Down Syndrome. I myself had the opposite happen-amnio came back neg for birth defect and then surprise-my wonderful daughter was born with Down Syndrome. Talk about an adjustment! It was not easy at first but within a few days I feel totally in love with her and then was put to test again as she went through major life saving surgery for a heart defect. She is now 18 years old, works, has friends, is smart and funny. Lots of support in the bay area. Contact www.dsconnection.org. Good luck and congratulations on your baby Mom
I am sorry to hear you have a positive amnio. As far as I know (and I am a physician), there are no false positives with amnio for Down Syndrome. They actually look at the chromosomes under the microscope and hence amnio is the gold standard. I am sorry you are dealing with this very difficult situation. N
The short answer to your question is yes, there is a very very slight possibility for a false positive amnio result, especially if the diagnosis is mosaicism. It sounds to me like you are seeking a reason not to terminate the pregnancy, and I urge you to seek support from a trusted source as you make this difficult personal decision. There is an archived BPN thread that focuses on false positive AFP results, and you might find some good insights into your decision there: http://parents.berkeley.edu/recommend/medical/down.html#con anonymous
i wanted to reply to this posting because there were some responses that were misleading. there is NO false positive for an amnio. it only occurs if there is a mosaicism and even then the dr's will know and do another test to make sure. yes, there are LOTS of false positives for the AFP blood test done during pregnancy that checks for downs syndrome. but this just calculates your risk of downs (and other chromosomal abnormalities). the amnio looks at the dna and they can see the extra chromosome that is the characteristic of downs. if the amnio shows that extra chromosome then your child definitely has downs. you can't deny the chromosomes. i am only clarifying this because you (original poster) should not be mislead during this difficult time. anon
Irritable uterus and amniocentesis
March 2009I'm looking for advice or other peoples' history with a fear I have about getting an amniocentesis. I had my first baby at age 37 and got a 1st trimester blood test and nuchal translucency that showed I had a very small risk of a child with a chromosomal defect (1/1337 for Down Syndrome and 1/6000 for Trisomy 18/13). I didn't have any additional tests or screening. At about 25 weeks I started contracting (lots...6+ per hour) and at 28 weeks I went on modified bedrest and on turbutaline to ''relax'' my uterus. My cervix remained long and hard and at 36.5 weeks I came off the medication and had my perfect, healthy daughter 1 week later.
This time around, I am 13 weeks pregnant and will be just 2 months shy of my 40th bday when I deliver. My first trimester screen and NT test came out with a 1/192 risk for Down Syndrome. I belong to Kaiser and in S.F they say their risk of loss from Amniocentesis is 1/300 to 1/500. They have me scheduled for one at 16.5 weeks but I am terrified. I know I cannot raise a special-needs baby. It would just be too taxing for my marriage and daughter. But I am so scared of hurting a perfectly normal baby by doing an amnio. I know the odds say there's less of a chance from a miscarriage due to amniocenteiss than my risk for a baby with Down syndrome, but my history of an ''irritable uterus'' that wants to contract all the time has me really worried. So far I have not had any contractions with this pregnancy and don't know if they will repeat this pregnancy or not, but last time they started at about week 25. Has anyone else had irritable uterus and still had a successful amniocentesis (meaning no loss related strictly from having the test done)? Please share. I'm so scared and torn about what to do. Anonymous
I was worried about the amnio risks as well, when I got my first test done. I cried while they took the sample. But I was 38, and the risks of miscarriage were small compared to my fear of having a baby with Down's. I had my second amnio at 41, and was much more confident about it. Both were completely normal, and I didn't have any pain, cramping, etc. It was huge relief to know the baby I was carrying was healthy. I had mine done at Kaiser SF. You could call and check what their rates of miscarriage are - I believe it's very low, 1 in 600 or something, depending on the individual practitioner. anonymous
You do not need to get the amnio. Your risk is only 1/192? That is a less than 1% risk of having a child with Downs Syndrome. Looking at it the other way around, you have more than a 99% likelihood of having a perfectly healthy baby. Also, your risk indicators increase if you are carrying a girl, because one of the indicators is an increase in a particular type of estrogen, which will be increased anyway if the fetus is a girl. Soooo, if you're worried, skip the amnio. You really don't need it with such a low risk, anyway. Passed the Amnio
Amniocentesis or not?
May 2007Hi, I am 29 years old and currently 19 weeks and 4 days pregnant.My AFP showed probability of 1/160 which puts me at higher risk for Downsyndrome then other women of my age (ratio for my age is 1/800).I got level 2 ultrasound done and everything looks normal in that.I now have to decide whether to go for Amniocentesis or not.Please advice based on your experience.Also if anybody know how is Obstetrix,Sanjose to get the test done.
I'm a 36 year old who, in consultation with my husband, chose to have an amniocentesis at SF Perinatal. Please know that data was released in December of 2006 to update risks of miscarriage during amnios - the rates are not 1/200, they are 1/1600. This was very reassuring for me because the 1/200 data was over 10 years old.
We had an excellent experience with SF Perinatal and I would highly recommend their services. After talking with a genetic counselor, we were given a 20 minute detailed ultrasound (which was fascinating), and the doctor performed the amnio in less than 2 minutes. It's much less stressful than ''the thought'' of the amnio itself. I definitely felt pressure when he inserted the needle (very thin needle and not as long as you imagine). It felt like a needle inserted into layers of fat, not muscle. An odd feeling, but not painful. To calm my nerves, I practiced deep breathing and watched my husband's face during the procedure. After it was over, all I could think was, ''this was easier than my first trimester blood draw!''. We did have the amnio on Friday so we could spend the weekend relaxing and focusing on positive results. I would absolutely have an amnio with future pregnancies. My best wishes to you, no matter your decision.
my feeling is that i wanted 100% of the available genetic information so i knew i wanted to do amnio (i'm also over 35 so they recommended it anyhow). if i were you it would come down to the choices you'd make if the amnio revealed problems you weren't expecting. it wasn't pleasant but it was fast and with a miscarriage rate of 1/2 of 1% wasn't too worried about that. anon
First, Congratulations!
Please know that the test you had done is notorious for false positives. If the ultra-sound was fine, I would not go for the amniocentesis, personally. I'm 29, too, and I just had a baby 6 months ago. If I were 34 then I might consider it. But not at 29.
I've know a woman who got a horrible infection, most likely for the amniocentesis, resulting in the loss of her baby. While this is anecdotal evidence, it still makes me sad--and the risk of miscarriage is still like 1 in 200 after the procedure is preformed (which is 'only slightly higher' than the 'normal rate.'
I guess the real question is, even if your baby has downsyndrome (which is probably unlikely based on the ultrasound) would you do anything differently in pregnancy? hope this helps
AFP tests are crap! I had a very long genetic counseling appointment when I was pregnant, and when I nailed the counselor down on the statistics of it, with it's 30 percent probabilties of false negatives or false positives...it's...well, crap. nevertheless..if it's down syndrome you're worried about there is a type of sonogram called a nuchal translucency..it's very accurate. I couldn't have a needle draging my blood into the amniotic fluid because I carry hepatitis C, and they could not assure me this might not infect my son. After MUCH wrangling they finally told me about the translucency. Downs syndrome was all I was worried about. My AFP results put me at 1 in 16...the NT took me to 1 in 800 or so. I took those odds, no problem. They look at the size of a fold of fat on the back of the fetus's neck at a certain number of weeks...like I said, it's apparently very accurate and not as scary as the needle. hope this helps. Tresca
I can only speak from experience, but I too, was out of the range of normal for my age (38 at the time) and was advised to get the amnio. However, I'd had a miscarriage about 6 months before (nothing to do w/ an amnio) and was so worried about this and so, after the level 2 ultra sound showed everything was okay, I tried to tune in to my baby and felt, on a gut level, that she was fine and she certainly is (she's a year old now, very happy and healthy). that's just how it turned out for me- it was so tough at the time and i know most amnios go really well... good luck! happy mom
Don't bother with the Amnio. Take a look at the previous posts about this issue. In all likelihood, you are probably having a girl, which is what has your AFP markers showing an increased risk. This always happens, because one of the markers is an increase in blood levels of one of the kinds of estrogens, which would be increased if you're having a girl. Remember, 1/160 is LESS THAN ONE PERCENT CHANCE of having a child with DS, which means you are more than 99% likely to have a perfectly chromosomally normal child. Those test are created to throw a REALLY WIDE NET, so they tend to get people all worried over nothing. My AFP came back showing 1/120, a higher risk than yours (and still only about 0.85% risk of Downs) I skipped the test, and my OB said he thought that was totally appropriate. No amnio, thank you.
This past advice may be helpful also. Check out: http://parents.berkeley.edu/advice/pregnancy/nuchal.html anon
I feel for you, because I remember what a difficult time this was for me, in my own pregnancy. This is a decision only you can make, but I'll share my own experience in case it helps. My AFP came back with a 1 in 97 chance of Downs syndrome, and I decided to do an amnio. This decision was based largely on two things. First, I was convinced that I would not want to raise a Downs syndrome child if I could avoid it. Second, having a rather anxious personality type, I knew that I wouldn't enjoy a moment of the pregnancy as long as I was in suspense about the possibility of Downs syndrome. When I was considering the alternatives I read, as perhaps you have, that amnios carry a 1 in 200 risk of causing a miscarriage. But I think that number is actually outdated, and the current odds are much, much better -- somewhere closer to 1 in 1,000. I do think it's important to find someone who has done a lot of amnios before, and if possible to find out how many of those amnios had bad outcomes. I was very reassured when my doctor told me he had done thousands and had never had a miscarriage result. And indeed, everything went fine. I was kind of nervous that it would hurt, but it wasn't bad at all -- kind of like getting a shot, just a little longer. The worst part was waiting for the results (which were good).
Good luck to you, and try to remember that a 1 in 160 chance of Downs syndrome means that of 160 women in your situation, 159 of them are going to get good news. You're probably one of them! Try not to worry
I had my last US at Obstetrix, SJ. I had indicators for Trisomy 18. the doctor at obstetrix was very patient, thurough, knowledgeable, and appropriately compassionate when discussing what the indicators meant. I chose not to get a amnio as by the time the results would be back, I couldn't imagine terminating the pregnancy. So I can't speak of their amnio skills, but I did have a positive experience while getting traumatic news. done with babies
Hello. This same thing happened to me when I was pregnant and I was younger than you are. Have you had a nuchal translucency test? I ask, because that should be a more accurate assessment. My risk through the AFP was rated as much higher than yours for having a baby with Down's, so we decided to have the amniocentesis, which we had at UCSF. I was glad we did, as it was very reassuring and I was very stressed. It went smoothly after some hitches, which the staff at UCSF handled very well. I am not sure if I will do it again if this risk factor pops up for us again, because I since learned that the AFP has a very high rate of false positives, especially for female fetuses. I can't tell you what to do, but I do know that having an amnio was the right choice for us. loving my healthy little girl
I am 40 years old and elected not to do any screening tests when I got pregnant in January, but instead to go right to diagnostic, which for me meant amnio. I didn't want the worry of false positives. I was concerned about amnio risks, but I'm on Kaiser in SF and they have a mandated class about all genetic testing and answer all your questions before you choose anything. My ob/gyn is one of the doctors who performs amnios and has also had two herself at that facility, so overall I felt I got a lot of information. The risks seemed extremely low at that center. The amnio itself was uneventful and actually no big deal--they didn't even put a band-aid on the tiny mark the needle left. The pain was about comparable to having blood drawn from your arm. The medical team that performed the amnio was very, very gentle and kind and professional. I was really impressed with the quality of care and how easy it was. We got our results in 10 business days and everything was fine. Of course, your experience may vary, but this was mine. Getting concrete results was worth it.
More children with Down syndrome are born to women under the age of 35 because most younger women don't do an amnio. If you are pretty sure you would not have the child because of Down syndrome, I would have the amnio. It definately happens to younger women, just less frequently. I have terminated a pregnancy for Down syndrome after doing quite a bit of resarch and speaking to parents with adult children with Down syndrome. If you do the amnio, get FISH results - you get these in 48 hours. good luck
You will get lots of feedback on this. I am sure you know that the MSAFP test has a 90% false positive rate. I know a woman who tested positive three times and has three healthy girls! It's such an insurance scam to force more testing, charges, the insurance companies, the doctor offices, the labs, ect. they are all making their money and collecting their data and placing fear in expected parents minds.
Of course, I knew the possibilities and tested a high likelihood on the MSAFP test and went to the ''state required'' genetic counseling meeting with the intent to decline the amnio, but they really scare you and after the sonogram, the tech left the room and the dr came in telling us that we were further along than originally thought which raised our chances of downs even higher. Then they gave us, literally, two minutes to decide. We decided to go for it, to know and be prepared-- I didn't want to wonder the outcome for 20+ weeks. I have to say, the amnio freaked me out. It was my first pregnancy and they send you home with a list of things to watch for, one of which is fluid leaking.... well, as you are aware, you get quite ''juicy'' in pregnancy and it progresses as your pregnancy does, I had know idea what was normal and had a worrisome weekend. In short, all turned out fine and my son is healthy and happy and smart, but we did find out that there is a balanced translocation in my family and with women who carry a balanced translocation, it gives a greater chance of miscarriage, as well as the possibility of the the translocation on the genes to be unbalanced which can create developmental and physical problems.
In short, you are young and if you are healthy and have no family history of issues, I might just let it go and chalk it up to a false positive. If you are the type of person that will frett over this throughout the remainder of your pregnancy, do yourself a favor and ease your worried mind-- find a good doctor and do the amnio and get the results and go from there. Ultimately, it's your decision, and you have to do what feels right for you. anon
I am a certified nurse midwife (and a mom) and I have to help patients with this decision quite a bit. First, the AFP isn't a great test. false positives and false negatives happen quite a bit. I feel like the most important questions to ask yourself is, ''If I had a baby with a genetic problem like downs syndrome would I terminate the pregnancy?''. If the answer is yes then get the amnio. If the answer is for sure no then don't get the amnio. The risk of a spontaneous abortion from an amniocentesis is about 1% but I feel like it's well worth the risk if you do not want to have a baby with downs syndrome or another genetic problem.
I'm sure the folks who did the sono said that a sonogram can pick up soft signs of downs but can easily miss a baby with chromosome problems.
I had a baby at 36 years old and knew I would terminate the pregnancy for any genetic problems. I had an amnio, it barely hurt, my baby was fine, and I had a healthy baby boy.
Good luck with your decision. If I was in your shoes I'd get the amnio.
Hello, Congratulations on your pregnancy. My advice to you is to have the amnio done. It will give you peace of mind. You don't want to go through your pregnancy with the thought of your child (probably) having Down's Syndrome.
I had an amnio at 39 years old simply because the risks are higher for a child to be born with Down's Syndrome. Not sure where your doctor is located, but I had mine done at Kaiser Oakland. The doctor was so good, he was done in 5 minutes. It was a very quick procedure. Nothing goes through the navel, but he went very close to it and most importantly, he made sure my baby was out of the way. When he was done, I said, ''Is that it?'' I was expecting more drama. I was on pins and needles waiting for the results and when they came back negative, the weight of the world was lifted off my shoulders. The sex of my child was predicted with 100% accuracy. My amnio happened in 1999 and my daughter was born in 2000. I am very glad I had the procedure done. Good luck. Cheryl
With my first child, my tests came back with a push to get an amnio and so of course I did, but I wish I hadn't. I was so stressed before, during and after, and it was quite painful (they had to poke me several times) and the waiting was awful. And it was negative, of course. I never got one again. You have to be really clear about what you would do if you received a positive result. You are not old enough to really worry (I didn't even get one with my last child at 38). Enjoy your pregnancy. Relaxed mom
Need recommendations for amnio
Jan 2007After scouring the boards, I'm not finding updated info on amnios, and really need some recommendations. Considering recent news about a lowered risk of miscarriage in amniocentesis (1/1600 vs. old data of 1/200), I'm curious to hear from women who used the following centers for the procedure (I'm not interested in CVS): East Bay Perinatal; California Pacific Medical Center; San Francisco Perinatal; UCSF Prenatal. Please tell me about your doctor, his/her bedside manner, overcoming fears of the procedure, and why you would or would not have the test performed again. San Francisco Perinatal is considered out-of-network for my insurance plan, so unless they are rated above and beyond the others, I would prefer to stay in- network. I'm 36, adopted, and we've had one first trimester miscarriage, so prenatal testing would ease our concerns. We're in our 8th week of pregnancy, and need to schedule this procedure as soon as possible. S.
I had an amniocentecis in early January at East Bay Perinatal in Oakland. I don't remember the docotor's name, however, she was Asian and was very nice and comforting during the procedure. She explained the procedure and what it would feel like for me (like drawing blood). Since it was my first anminocentesis, they provided genetic counseling before the procedure where they ask you about your family's health history and walk you through a few chromosome charts. It really made me understand the importance of knowing yours and your partner's health history. Try to schedule your appointment first thing in the morning to minimize your wait times as schedules back up. Pregnant with second child
I had my amnio done at East Bay Perinatal by Dr. Marinoff, I think? He was great. I did not have any screening done beforehand; I knew that at age 37, I wanted the amnio no matter what. It really depends on what you believe the risks are and how you feel about having an unexpected outcome of your pregnancy. It's such a personal decision. I asked my OB: ''What would you tell you daughter to do?'' He said he'd tell her to get the amnio no matter how old she was. I was, however, very apprehensive about the procedure, the pain, the needle, that I might do something afterward to cause a miscarriage, etc. It turned out to be nothing. The pain, for me, was less than the pain I feel when getting my blood drawn. The sensation of the amnio was definitely strange and disconcerting. I did not ever look at the needle. I felt a little weird afterward for a few hours. All in all, my main feeling was, ''Gosh, I wish I hadn't wasted all that time worrying.'' If I ever got pregnant again, I would not hesitate to get an amnio. The only thing I might consider would be CVS, in order to get the results earlier. That way, if the news were really bad and I chose to terminate the pregnancy, I wouldn't be so far along. Good luck with your decision! Happy to have the amnio
I reccomend either amnio or CVS if you might terminate a pregnancy if a problem is found. I say ''if'' because some people are not sure if they would terminate. We ended two pregnancies for T21 - Down syndrome - when I was 37 (no family history). If you do not want to raise a child with this issue, or some of the other more common trisomies (T18, Y13), have the amnio. California Pacific Medical Center would be my choice for docs/experience. good luck
I've visited three clinics in the Bay Area for prenatal testing, and researched a few others, and ended up going to the Peninsula to have my Amnio done by Dr. Liner at Peninsula Prenatal Diagnostics . See attached http://www.obgynscan.com/about.htm I had to pay a higher PPO rate to go there instead of East Bay Perinatal, but I'm really glad I did it. They have a very low rate of complications, and I felt they were extremely careful and knowledgable. It was also the only place my husband and I felt the geneticists really knew their stuff, since we had some fairly complicated genetics questions. By comparison, at UCSF, where we did nuchal translucency and considered doing CVS, the geneticist seemed to know less than we did and couldn't give us accurate information on the complication rate for procedures. I've done ultrasounds at East Bay Perinatal and been less than impressed. Dr. Liner was great and the bedside manner at the whole clinic was fabulous. They also offer the option of getting FISH analysis done so you get the results in 2 days, which we elected to do. It all turned out fine and it was worth the extra money to feel like we were being taken care of. an anxious mom
I had an amnio at East Bay Perinatal in April 2005 (I think it was Dr. Weiss, but not sure) and found the people I worked with (doctor, technicians and genetic counselor) to be warm, caring and competent. Their manner and answers went a long way towards relieving my anxiety about the procedure, but, honestly, the best thing was hearing other people's stories of success. When I heard I had to have an amnio and freaked out a little bit, I started talking to my girlfriends and almost every one of them had a story about an uneventful amnio and subsequent healthy baby, and those that didn't referred me to their friends who did. It was so reassuring and wonderful to see how much people cared. One other thing that helped calm me was doing some visualization of the procedure going well, my body healing, and the baby being delivered healthy -- it sounds a little silly, but if nothing else it made me feel like I was doing something to go through that mental exercise every day, since there really isn't anything physical you can do to affect the procedure, and I'm the kind of person who likes to feel like I'm doing something. I would do an amnio again without hesitation, because of the peace of mind -- if I hadn't had the amnio, I would have been worrying right up to delivery that maybe the baby had Downs, and it really would have hampered my ability to enjoy the pregnancy and be excited about the baby coming. Best of luck to you. Healthy baby, no complications
2004 - 2006 Recommendations
Safest place to get an amnio?
Nov 2006i am 12 weeks pregnant and plan to have an amnio at 16 weeks. as best as i can tell, bay area perinatal and cpmc have the most volume and the lowest miscarriage rates. are there any doctors i should stay away from at either place? can anyone recommend another office/hospital for prenatal testing? any advice as soon as possible would be greatly appreciated. anon
Dr Paula Melone is supposed to have an excellent record for safe amnios.
Should I skip the amnio?
June 2006I am looking for advice about having an amnio (and I need help quickly!). I am 37 (36 at conception) and got pregnant the first month we tried. My husband is 44. We got back our AFP results and they were 1:10,000 for Down's and 1:10,000 Trisome 18 and 1:6,600 for neural tube defect. Are these the kind of results that make women decide to skip an amnio? Or do people go forward to absolutely sure. Also, I know many women who have had amnio and no one who has lost a pregnancy with it. I am very concerned about having a special needs child but have no family history of it. I am also very concerned about possibly losing a perfectly health pregnancy. My NT was ''perfect'' according to the tech. Joanna
Those risks seem pretty low to me. We had similar odds (I was also 37 at the time of conception/birth) and opted to do the nuchal translucency instead. Find out what the risks of complications from the amnio are and compare those to the risks of downs, etc. and see where your comfort level is. I have friends who do an amnio no matter what the odds, and others who won't do it no matter what. It's about living within your own comfort zone on these kinds of parenting decisions--and that takes a little thought and research. Good luck anon
The decision to have an amnio was one of the hardest decisions I've ever made, so I sympathize. I really had no reason to have one except for my age (just over 35 at the time). I'm glad I did it. It was totally painless. I even did it for my second pregnancy. Both came out just fine. The reason I chose to do it was just ''to know''. I don't know what actions I would have taken had the amnio been 'positive' for anything. I was going to cross that bridge if I got to it. If I were in your shoes I would go ahead with it. Just make sure you rest for the following two days (no lifting, etc...really take it easy), because from what I understand, loss of pregnancy after an amnio is usually caused, not by the amnio itself, but by the mother overdoing it afterwards (don't quote me on that though). Good luck with your decision.
anon
I think if you're at all concerned about giving birth to a baby with any disability, it's best to know so that you can prepare yourself for the future. Check the miscarriage rate after amnio with your doctor's office - I'll bet it's very low with the number of older women giving birth in the Bay Area. I've had two amnio's that cleared any fears and eased my mind so much that I enjoyed the rest of each pregnancy so much more with the knowledge that the amnios gave me.. -Best of luck to you.
If having news of a genetic defect would change the course of your pregnancy, then you should have an amnio. And, by the way, I know of know one who has miscarried from amnio or CVS. Best of luck to you
Julia
IMHO you are looking at the statistics with too flippant a tone. My sister and her husband, both under 30, did not have an amnio and did not expect that their baby would be born with DS and would have to spend most of the first year of his life in the hospital. If you have spent significant time around a DS child, pref adolescent or adult when they are still about 4 years old intellectually but with the size and frustrations of a teenager, and still would love and live with your child with DS, then by all means go ahead. If not, please heed advice from someone whose nephew will never even learn to speak. Daphne
I wouldn't do the amnio if it were me. With odds that you stated, the baby is probably fine. I did an amnio with one of my pregnancies strictly due to my age (I was 38 at the time). I delivered a still birth days after the procedure. I think the miscarriage rate post amnio is far higher than reported Been There Before
I was in your shoes (pregnant at 36, due at 37) and did not want an amnio because of the (however slight) risk of miscarriage. I'd had two miscarriages and did not want to go through it again. I had a perfectly healthy child 3 years before, have no family history of any kind of birth defects or conditions, and did not see how just getting a bit older would suddenly put me at sufficient risk for a problem. My husband too is older, but from what I understand the only birth condition linked to dad's age is dwarfism, and the risk is not significant. So, I had the nuchal translucency ultrasound, instead, which is the standard of care in Europe, but seems somewhat uncommon here. Everyone at Kaiser encouraged me to have the amnio, seemed to expect that I'd have it-even though I had no other risk factors. Long story short, the NT was normal, and my baby was fine. I think your odds of a problem are smaller than your odds of a miscarriage with an amnio. Good luck-chances are excellent that your baby is fine. ''old'' mom
I had good NT results like you did and upon consulting with my doctor, did not have the amnio done. I was 36 at the time. I am happy with my decision. Good luck! nt ok
No one but you can make the decision about whether to have an Amnio... but the odds you quoted were of the order of 1 in 10,000 and 1 in 6600? With that and a perfect NT, what additional reassurance do you need?
When I was making the same decision (with much worse odds) I tried applying the odds to OTHER decisions... would you cross a street with those odds? Would you eat raw fish? Undercooked hamburger? Buy a lottery ticket? Return a sweepstakes entry? The threshold for me really was when the chance of miscarriage was less than the chance of any anomaly --- I think the range was around 1:64 to 1:200 with my last child (I was 44). I had a CVS and worried anyway.
For the record, my youngest is ''perfect'' like his siblings, but he's really pretty naughty.
Good luck!! Old Mom
Amnio or not???
March 2006I am 38 and expecting my second child in the fall. I just had a nuchal translucency test that showed a 1:900 risk for Down Syndrome. Two years ago when I was pregnant with my first child I had the same test and the ratio was 1:1800. My husband and I opted not to get amnio at that time because we were very comfortable with the results. The risk of miscarriage from amnio at the place I would go to is 1:300. Although the risk of miscarriage is 3 times higher than my personal risk of having a baby with Down Syndrome, I feel like there is pressure from the medical community (because of my age) to get amnio anyhow. I would prefer not to, although I also know we would probably terminate if we knew our baby would have Down Syndrome. I am not the type to be anxious about it during my whole pregnancy, but I would like to have a better understanding of the true risk. Is there anyone who has had a similar experience with this decision making process who can offer advice? Has anyone had a decent nuchal result but then ended up having a baby with Down Syndrome anyhow? -anon
I am 40 years old and I just had my first baby 5 months ago. I, too, had a nuceal translucency scan (my results came back 1 in 225), and experienced pressure from some sources to do the amnio. One practitioner even said something along the lines of ''you'll NEED to get the amnio because of your age.'' I knew it was my choice, however, and I knew I didn't want to risk it. My OB backed me up 100%. You need to do what's right for you, but if my results came back 1 in 900 there is NO WAY I would do an amnio. Just my humble opinion. anon
I had my first child at age 36 (only a couple of years younger than you are now), was reasonably satisfied with my odds after the nucal translucency test, & blew off the amnio because (as you pointed out) a 1:300 potential miscarriage ratio seemed awfully high. Also, I had heard my daughter's heartbeat, had seen her sonogram (during which she lay on her back, waved her tiny little vestigial fingers and toes like the baby she would soon become and even appeared to be smiling as she gently bounced up and down on my full bladder) & hence was already so in love with her that I wanted her regardless of any potential defects. She turned out to be perfectly normal (whatever ''normal'' means). Go with your gut -- lots of moms are having kids later these days. Since we're probably the healthiest generation in terms of the prenatal care, nutrition, & pediatric care we received in addition to a fairly high level of health consciousness throughout our lives (at least in places like the Bay Area), who really knows when our eggs will be too old? Our doctors rightfully want to err on the side of caution, but when push comes to shove, I think mom knows best & that if the prospect of amniocentesis gives you the heebie-jeebies, you shouldn't do it. Personally, a 1:900 chance of Down's syndrome seems way more remote to me than a 1:300 chance of miscarriage, even if the odds aren't as favorable than when you had your first child. Congratulations on your pregnancy & good luck. Another ''mature'' mom
The real question is this: what will you do with the knowledge you gain from the amnio? It's a very personal decision you have to make. I had my first child at 37 and twins at 39. I also was also feeling pressured and confused until I realized that regardless of the results, I would not terminate my pregnancy. If the same is true for you, then its not really worth the risk. -Lucky mom of 3 healthy kids
It might be best for you to have a consultation with a geneticist now, while you are deciding. Also, keep in mind that Down's Syndrome is only one of the chromosomal amnormalities that a fetus can get. The others can't be seen on ultrasound, so you might want to know the odds for them too. JM
First let me say as a mother of a beautiful and thriving daughter with Ds, that Down Syndrome has a PR problem :-) People think that it's one of the worst things in the world but it truly isn't. That's enough about that but i had to say it.
That being said, I would say a large percentage of mom's i know with kids with Ds are under 35 and passed all the SCREENINGS (nucheal fold is a screening) with flying colors. Amnio and CVS are the only certain tests. Though one mom in my group had a false negative CVS. Anyway good luck with your decision. If you or anyone wants to know more about Ds (many Doctor's give outdated info etc.), feel free to email me. archiepug
I had to respond to this. I was 39 when I had my son and during that pregnancy I had the NT test with the double marker screen. My results were 1:300 which were much lower than yours. We decided not to have amnio because the results were still better than what they said was the miscarriate rate for amnio.
I'm now 41 and pregnant with my second. This time, my doctor felt that my age would skew the NT results even more (sounded weird to me but I weighed the options). Because my results weren't that great the first time, I went straight for amnio. My results were fine. Baby is a girl. Due in July. And, had no problems whatsoever with the amnio.
With your results, even 1:800, I'd say, you're probably fine skipping the amnio. that's probably what I would have done in your shoes.
that said, the peace of mind after the amnio was nice. And, having amnio was really no big deal. Upon further research, it seems the rate of miscarriage with amnio is somehwat deceiving. Some say that the rate of miscarriae in the control groups is roughly the same so I'm not convinced that amnio in itself causes miscarriage. But, that's easier for me to say now that I had good results and no complications from the test.
I think the odds are probably with you and while the NT test is not diagnostic, I would think with those odds you are ok. I hear there are more false positives than negatives. Good luck. anon
Hi there. I am 39 and expecting my 2nd child and am scheduled for my amnio in May. I know that there are a host of different statistics out there, but I have done my own research (I have an M.S. and work in healthcare) and this is what I found. At age 35, the risk of miscarriage is lower than the risk of having a baby born with Down Syndrome or other genetic abnormalities.
This is where you really need to do some soul searching and talk with your husband and maybe even see a genetic counseler (a health professional usually with a Master's or better trained to help you with this very question.) At age 39, you have a 1 in about 200 chance of having a baby born with Down Syndrome, but a 1 in about 140 chance of giving birth to a baby with any kind of chromosome disorder. The risk of miscarriage is much, much lower than this, especially if it is performed by someone who does amnios all the time and is very experienced. I had an amnio last time and have a healthy son, and it really was not a big deal, not really that painful, nothing much to see where the needle had went in. But you have to decide what is right for you. For me, my cousin has Down Syndrome, is 19 years old and still wears diaper pads. I also have another cousin with spina Bifida who is physically disabled. Although my family loves those cousins dearly, I have seen first hand how difficult it is to raise a child with disabilities. The one cousin burned the house down accidentally, the other needs lots of outside assistance for daily activities. While the friends of my aunt are now retired and taking vacations, my aunt is still changing diapers and watching her son 24/7 because he is not safe alone. Her marriage was torn apart by this, and her health is not good. I am always fighting for the rights of disabled people, because of my cousins, but I would not knowingly bring a disabled child into the world. For me, I had no question about the amnio, because I am so certain that we would terminate the pregnancy if there were genetic abnormalities. Good luck with your decision, it is not an easy one. need to know
I gave birth last year at age 37. My screenings showed a much higher risk of Downs than yours (though still considered a ''slight'' risk) of 1 in 120. That equals to a less than ONE PERCENT chance of my baby having Downs Syndrome. We opted not to have the amnio, and I recommend that you forego it too, if you're not feeling inclined. Especially since your risk of miscarriage is even higher. Ignore the pressure from the medical community. Their model is to go ahead and test just to rule out every tiniest possibility, it's totally unneccessary. In fact, my OB fully supported my choice NOT to have an amnio, as he felt it was unneccessary, too (like you, my nucal fold test came back just fine-- also, my 20 week US showed no soft-markers for Downs or anything else).
I don't think you need an amnio-- think about it, if 1 in 120 is only 0.85 percent risk of Downs, how tiny a percentage is 1 in 900? REALLY SMALL!!! Your baby is fine, it's not worth the risk. No Amnio For Me, Please!
We went through a similar situation recently. We found the following report, available for $5.05 on the Inernet, to be helpful in thinking about our options:
The Amniocentesis Report A Decision Guide for Expectant Parents and Health Care Professionals Authors: Dr. Asaf Ferber, M.D. (OB) Dr. Nachum Sicherman, Ph.D: Professor of economics http://www.amniocentesis.org/ Anon
My risk for Down syndrome with my first pregnancy was around 1 in 300 - amnio confirmed Down syndrome & we terminated the pregnancy - I was 37. This happened again, when I was nearly 38. What you need to ask yourself is what the outcome would be if the amnio confirmed down syndrome. Unfortunately, some women are the ''one'' in the equation. good luck
Hi - I was confronted with almost exactly the same situation last year, and opted to avoid the amnio. I was really on the fence and agitating over the decision for a long time, and kept coming back to the relative arbitrariness of the use of the age 35 as the ''magic number'' for advising amnios. (I had my first child at 33). I finally asked my genetic counselor, ''Given all of my test results, if I were 34 instead of 37, would anyone even be mentioning amios to me?'' Her answer was no. That, and my aversion to letting somebody stick a needle into the safe space where my baby was growing were enough for me to feel like I was willing to take the risk of not having every scrap of info that might be available to me about my baby, who turned out to be just fine. So, I guess my adice is to gather as much information as is available short of invasive testing, follow your gut instincts, and then relax and enjoy your pregnancy. Best of luck to you! Tamarah
I would not have an amnio. I had a miscarriage with my first pregnancy & I was 36 years old. Then I got pregnant again and my doctor told me that an amnio can cause another miscarriage. So I decided not to have amnio & instead my I did the blood test. I forgot what it's called, but there's a blood test to take for down syndrome. My test came back fine. But shortly after that I was scheduled my first ultrasound. With new technology, with the ultrasound the doctor that reviews it can tell if your baby will have down or not. They measure everything and you can actually see your baby's features and spinal cord. So if you are not sure, wait for the ultrasound, it will make you feel at ease. Good Luck! Shelly
First, congrats on your pregnancy. A 1 in 900 chance for the baby having trisomy 21 (Down Syndrome) is EXCELLENT for a 38 year old mother. The average statistical risk of Down Syndrome for somebody your age is over seven times greater than your personal risk. That's really good news.
But yes, it is possible for a person to screen normal on the NT scan and still have a baby with a chromosome error. Not common, but possible. So whether the amnio is right for you comes down to how catastrophic you feel a trisomy baby would be for your family. If you decide you do not want a trisomy child under ANY circumstances, then the only way to truly ensure that is to do an amnio (or CVS) and to terminate if you get poor results. But if you come to decide your fear of hurting a normal baby from the amnio is greatest, then skip the amnio and be confident that the odds are still in your favor.
I know what you mean about doctors pushing you toward amnios if you are over 35. It can feel annoying, especially if your NT results are good. But, speaking as a woman who had a completely normal pregnancy and baby followed by a chromasomally abnormal pregnancy, I can say that the rammifications of having a trisomy baby (mine was trisomy 18) are incredibly large for the child, the parents, and any other kids in the family.
That doesn't mean you should ultimately do an amnio. But I would encourage anyone who is pregnant in their thirties to make sure they give this a lot of thought and are at peace with your decision afterwards. At least then, regardless of your eventual outcome, you won't be haunted. E in Oakland
A couple of things you should know. The ratio they give you for likelihood of down's syndrome is a calculated number and your age is one figure used in the calculation. So if nothing else has changed except your age, the ratio will still be less favorable with each subsequent child.
Amnios are risky and the statistics do not reflect all the risk, unless things have changed in the last few years. I have a friend who got an infection from her amnio - she felt fine before, was having an umcomplicated pregnancy and never felt right afterward. She delivered a VERY premature infant 6 days after the anmio. Her experience is not reflected in official stats for amnio complications because the delivery did not happen within 48 hours of the procedure. how much does this skew the results? I don't know. Some potential problems will be apparent with the mid-pregnancy ultrasound and may inform whether an amnio is needed. have you gotten that yet?
its not an easy decision to make. good luck
Lots of responses to this one again! It's an important decision. Just wanted to add that a friend of a neighbor had an amnio and she aborted the fetus because of the amnio. I also wonder how many abortions due to amnio are not called such, to protect the practitioner. I received lots of pressure for amnio too at 35! It seemed crazy to me to pressure so much at such young age. My second pregnancy I had an amnio; I didn't mind the needle going in, I minded the disturbance to my precious baby secondary to the stress of the amnio.
Doctors these days often will do amazing amounts of tests, and NOTHING can guarantee you have a normal baby. Maybe the increase in autism and ADD we see now is a result of more interventions during preganancy and labor (in Times Magazine in an article about Down's, it read that mothers of Down's babies have had Ptosin during labor four to five times more, percentage wise, then the mothers whose babies didn't end up with autism). Lastly, the amnio will not tell you how severe the Down's will be. Whether it will be very mild or severe severe will not be told on this test at all; I really asked about this one too when I was pregnant. Also, you are not supposed to lift anything more then 10 lbs. for three days after; it meant I couln't lift my 2 yr. old up to my lap. My last pregnancy, I opted for no tests at all (including that sugar test where you have to drink this disgustingly sweet stuff; I really asked my midwife, and it seems if you are diabetic there will be other signs too, normally). All the waits after every test just stressed me out too much.
Anyhow, a personal decision. Weigh all the factors. been there
Anxiety about amnio at 40
June 2005I'm 40 and my due date is 12/5/05. My amnio is scheduled for 6/20. Does anyone have any advice about how to remain calm during and how to take care of myself after the procedure? The baby's father unfortunately cannot come to the appt. with me (he lives out of state) but other good friends will be there. Also, I did intense physical therapy for a slipped lumbar disk (spodylolisthesis, stage 2) all last fall, and am concerned about back pain during my next two trimesters and labor/delivery. My orthopedist believes I can have a normal delivery and won't need a c-section. Does anyone have any experience with this? I'd love to hear your story. Thanks so much. StinsonsMom
Hello, I had an amniocentesis at 39 (5 years ago) and was very anxious like you because I didn't know what to expect. Mine was performed at Kaiser Oakland and the doctor was very good; he was in and out of the room in 5 minutes. All I was concerned with was ''the needle.'' Not sure if you know this, but nothing goes through the navel, even though that's what a lot of people think. He went very close to it, I'd say a couple of inches below, but not through it. The lights in the room were dim and the sonogram was on to make sure the baby was out of the way. The nurse scrubbed my abdomen with Betadine. When the doctor came in, he made a dot pen mark where he wanted to insert the needle. He made sure that I didn't see it before the procedure and held it behind his back. When he was doing the amnio, I turned my head and I tensed up because I was scared and nervous. He kept telling me to relax which was difficult. (It's not everyday I have a needle inserted into my abdomen.) He did what he had to do and was gone very quickly. All I could say was, ''was that it?'' I was expecting more drama, but it wasn't a big deal. I'm glad I had the procedure done.
Afterwards, I went home to bed to rest and stayed off my feet the remainder of the day. I wasn't sore and was able to go to work the next day. Good luck to you. ~Cheryl~
Hi StinsonsMom
First off, congrats on your pregnancy. Can't offer much in the way of the amnio. I turned 40 during my pregnancy, but opted out of the amnio. The procedure is pretty routine these days and risk of complications low. Good that you are going with a friend. If you are considering having a Doula for your birth this may be a good time to break her in!
As for the spondylo, best recomendation is to keep your deep abdominal muscles strong (transverse abdominus) and Hamstrings flexible. I'm sure that is what they worked on in your rehab as well. As your body changes you will need to continue to strengthen & stretch to accomodate to the changes. Also, right after the birth you will need to work on the abdominal strengthening (isometrics initially) as you may be at risk for injury do to weakened abdominal muscles that have been overstretched from the pregnancy. Don't discount bracing during your pregnancy as there are a number of supportive braces designed to decrease strain to the low back during pregnancy. A good combination is to find a pre-natal Yoga class as well as pre-natal pilates instructor (preferably one that has experience in back rehab, many Physical Therapists have their pilates certification these days). Best of luck, if you have any questions feel free to contact me. Kelli Manring, PT, MSPT Doula, Pilates Instructor, and mother of a beautiful 8 mo. baby girl!
Ideas for not getting nervous: 1) Don't watch. Look away.(I got this advice from a friend) 2) Ask for a local anesthetic. They really work great.After the little sting, you feel nothing. No sweat! 3) I had the nurse massage my feet- which was really nice. The docs work fast so, once they find out where the baby is, expect it to all be done in 5 minutes. JM
Please have the Amnio with as little worry as possible. I had one for this baby I'm carrying and am so glad I did. The anticipation was the worst of it. Its over in seconds and doesn't hurt. I've had pap smears that were more uncomfortable. Plus getting the news that our daughter has no genetic problems enabled us to enjoy the pregnancy so much more. Good luck! mari
I've had 2 amnios, and both times, it just wasn't nearly as bad as I thought it would be. Definitely take a friend if your husband can't come (he'll miss the really great ultrsound that they do at the same time). What I found helped me the most to stay calm (because I HATE needles, like most people, I suppose) was the controlled breathing that I learned through the yoga classes I take. Probably any kind of controlled breathing would work (you could try something simple like counting your breath and making the inhale the same length as the exhale, then try making the exhale twice as long as the inhale... that kind of thing). Good luck! raissa
I had amnio last year. I was very very scared but it ended up being no big deal and it was really OK. I was so nervous that I brought my husband and mother-in-law for support. Turns out the needle that they use is thinner than the one they use for drawing blood out of your arm. One thing that helped me was that I covered my eyes and didn't look at the needle once (it is very long). I felt a little pinch and asked the doctor to tell me when he started drawing fluid and he told me he already was! I barely felt the needle and it was so manageable that I began to relax on the spot during the procedure. Afterwards, my husband told me that the baby was moving around like crazy and so the doctor kept having to move the needle, but I never felt any of this! After the procedure, I had mild cramping. I just took tylenol and I had a couple of chick flicks waiting for me at home so I just laid on the couch and watched movies. Someone told me that a small glass of wine will help relax any cramping too. OOps, I just realized that your amnio already happened two days ago! Ah well, perhaps this advice will help others. Hope it went OK! Andi
a few months ago i had this procedure. i'm 37. It was NOT BAD AT ALL. I have had worse (more painful/uncomfortable) pelvic exams and even dentist appointments. It simply wasn't as horrific as it sounds, in my experience. this has also been the experience of nearly all my mommy friends. the build-up and anxiety is worse than the actual procedure. that said, however, i would recommend, if at all possible, having someone go with you and drive you home since your partner cannot be there. KK
Hi Stinsonsmon --
Here is my experience so far. I am in my 28th week of pregnancy, due in mid September. I just turned 40, and had amino. It was relatively painless. Remember, you are not required to have amnio, but there are some compelling reasons to do so, especially at ''advanced maternal age'' -- it can help to alleviate general pregnancy and ''my baby'' anxiety, and/or provide a foundation to deal with future planning. As for relaxing during the procedure-- keep breathing. The only painful part is the initial insertion of the needle... ask if they use topical lidacane to deal with that. I did not find it necessary. If you have a needle phobia, hold someone's hand and just DO NOT LOOK. They will probably use a sonogram to guide the needle once it is inside, so ask for a mirror to see the sonogram screen -- you will be able to see the fetus, a cool experience, take that very wild opportunity to be distracted from the amnio procedure itself.
About the back -- I have had chronic back problems arising form a cluster of injuries when I was in my 20s -- compressed and degenerated discs in the 4th and 5th lumbar region, cervical disk compression and bone spurs, and a history of very acute muscle tension in both the ''bra'' (thoracic) and ''Girdle'' (pelvic) regions, both front and back. I have not ever slipped a disc, however, tho that is a danger. I delayed pregnancy because I was very fearful about my structural soundness, but got knocked up with out pre-planning a body-mechanic strategy. During my pregnancy I have been amazed and delighted that my chronic and daily lower back and hip pains evaporated during the first and second trimesters. I think this is due to the flood of ligament loosening hormones, etc. that prepare you body for pregnancy and childbirth. I expect that after pregnancy and delivery thee lovely lubricating and stretching hormones will evaporate, and my lumbar spine will return to its former state of desiccation and disrepair. So I'm enjoying the benefits of hormone induced hip-pelvis-back relaxation.
Now that I am in the third trimester, and showing and carrying more weight, I am feeling tension in my mid back, but generally can deal with it by walking (sitting seems to set it off, I am inattentive to my sitting posture). I am also apprehensive about the next three months, and about delivery, particularly about the prospect of back labor. I don't think, however, that there is any correlation between history of back injury and the type of labor you will have. I have also heard that going into a pregnancy with a higher than general pain threshold can be ultimately beneficial in labor, because the early and mid stages of labor contractions are painful in ways that are ''familiar'' and you might already have internalized strategies for dealing with pain, and a more realistic sense of what your body can handle.
I have started birthing classes (Kaiser's generic type), and am an idiot about doing my homework. If you can take classes on breathing and relaxation techniques, this will probably be really helpful.
My final words of wisdom. Plan and prepare, but also know that an attitude of total surrender is the real ticket through this process. Have a wonderful ride. Keep breathing. sara
I had my amnio at 40 and I was on my own for the process. My husband couldn't come and I opted not to have a friend come in his place. The procedure is quicker than you think. The doctor and techs do this all day long so they know how to keep the atmosphere calm. I focused on the ceiling and my breathing and my cute baby on the monitor.
You will need someone to drive you home. It would be ideal to have someone stay with you too. Do you have any close friends that can pamper you for a few hours? That's what you need. After I got home I lounged on the sofa with a bunch of magazines, a good book and snacks. For some reason, the process can make you feel wiped out. Plan on relaxing for the rest of the day and you'll be fine. Been There
Hi there - I know what you're going through with the amnio - I just had one a couple months ago after getting a questionable result on the AFP test (turns out everything's fine). I was much more worried about the risks of the amnio than about potential genetic disorders. What helped calm me immensely was hearing from all the people (including a lot of stuff on the BPN site) who had uncomplicated amnios and perfectly healthy babies. Once you start reading people's stories and looking at the numbers, you realize the odds really are in your favor, especially if you go to a clinic that specializes in prenatal screening. The other thing that really helped was visualization - as soon as I found out I needed an amnio, I started picturing my body healing, telling myself my womb would heal up even stronger than before, and picturing the baby being born healthy and strong. It made me feel like I was doing something constructive. The best news is, the amnio itself was a breeze compared to all the stressing beforehand! I just went home and slept after and took it easy for a day or two. Waiting for the results is hard, but keep busy and it goes pretty fast. Good luck and be strong! JP
I am 38, and also have an inherited blood disorder and was on blood thinners, so I was pretty nervous about the amnio and the risk involved to the fetus. And I also had gone through a miscarriage (at 10 weeks) prior to this pregnancy with a followup D You know what, the amnio was no big deal. Don't psych yourself out about it. It really was less painful than some blood draws that I have had, and you could barely see the puncture mark on my belly. I felt fine afterward and it was actually a treat to be told to ''rest'' and have others wait on me for a little while as i was still working full time and doing lots of packing as we were getting ready to move. The worst part was the waiting for the results, and imagining all of the things that could go wrong. I can't describe the relief I felt when we heard that everything was ok. When I look back on it, it is just one of the scary things that you start having to deal with on the road to parenthood, to prepare you for the every! day scary stuff that you just can' Mom to a healthy toddler
Amnio results show echogenic bowel
Feb 2004My husband and I went in for a 16-week ultrasound/amnio. We were told the brightness of the fetus' bowel (''echogenic bowel'') is a soft marker for cystic fibrosis, down syndrome, or a fetal viral infection such as cytomegalovirus or toxoplasmosis. Extra fluid was taken for CF and viral tests and my blood was taken, too, to check to see if I have an active virus infection or if I am a CF carrier. Although we were told it was likely that none of these were wrong, it was very late on a Friday afternoon, everyone was in a hurry, and my husband and I were rather dumbstruck and frightened. What research I could do on the internet over the weekend while counselors were not available should be somewhat reassuring to us (the newest numbers seem to suggest an 85% chance that nothing is actually wrong) but we are very depressed and worried. Does anyone have any experience with this? What were the negative or positive outcomes? Any advice would be very helpful, both while we wait (and wait) for the results and how to handle the news if it is bad. worried
I feel for you. We had the same thing happen to us at an 18 week ultrasound, the day after Christmas when nobody seemed particularly interested or available. My friend, who used to be a midwife and still works in the child and maternal health field, had it right when she said ''oh, that one, it happens all the time, don't worry about it.'' Our case was a little different since we already had a CVS done (so no Downs) and had been tested for Cystic Fibrosis so we knew it wasn't either one of those things. So, having said all that -- I hope you'll have the same outcome as we did -- a beautiful almost 2 year old daughter with no problems. You'll have a difficult few weeks ahead waiting for your amnio results but the chances are good (though never 100%) that you'll g! et the outcome you want. Wishing you the very best in the meantime. Anna
We had one of those findings too and it turned out to be a false alarm. Like you, we had days of worry waiting to find out more. My only advice is that the odds are with you on this. Good luck. Jim
I was told my baby has an echogenic cardiac focus at my 20 week scan. All the other tests showed I had a low risk of any abnormality and I was advised not to worry about it. Of course, I am worried but I found this website comforting. It is a babycenter chat board with parents going through similar worries. I hope it helps. http://bbs.babycenter.com/board/pregnancy/prenatalhealth/6669/thread/480414?i=50#go erica
During our 16 week ultrasound, my first son showed an echogenic intra-cardiac spot -- bright spot on his heart. (They told us it was either something like a freckle, or an indication that our son had down syndrome.) We were, like you, terrified. The supposedly reassuring numbers did nothing to calm my terror. After a few days of trying to think positively, we scheduled an amniocentisis (sp) to conclusively determine the cause of the spot. (All that stress could not be good for the fetus... I wanted to know and relax or know and prepare for the worst.) The great news is that all was and is, perfectly fine. The bad news is that I was scared untill I got the results of the amnio. I wish you all the best! Grateful Mommy
I had the same thing happen at my 18-week ultrasound. My husband and I attended genetic counseling, where we learned that CF was unlikely and that my AFP screening test was normal. I left feeling like an amnio was unnecessary, whereas my husband left the counseling feeling the exact opposite. After debating for a couple of days on what to do, I consulted with my OB/GYN who informed me that she elected to have amnios with both of her children (even though she was under 35) just to make sure everything was ok. Hearing that made me feel like the amnio was not that big of a deal, and so we went on to have one. Anyway, the amnio results were normal, and we were able ! to relax for the remainder of the pregnancy. I went for a follow-up ultrasound a few weeks later, and they found no presence of echogenecity. Good luck to you, I know what an agonizing time this can be. mom of a healthy baby
We had the same thing happen to us. They too were very hurried and vague with us, however, my OBGYN was great. He said to not worry about it, these ultrasounds actually see too much. Everything was fine (we were especially worried as I am a CF carrier and for some reason the clinic would not test the fetus this time when we had CVS as they had with my previous pregnancy) There was really nothing we could do except have several ultrasounds between 17 weeks and 38 weeks when I delivered. Is spent WAY TOO MUCH time on the internet freaking myself out and stressing. We had a perfect baby who is now a perfect 2 year old. ! Best of luch and try not too worry. I'm sure it's nothing. anon
My heart goes out to you since we went through the exact same thing. I got very worried about the online info I found but when I went in for the amnio (the echogenic bowel was seen during an ultrasound) the doctor said that different machines can also produce this over brightness. The weeks of waiting for the amnio results were agonizing. It helped me to have a semi-mindless project to do ( I organized my son's soccer team) also talking to a few close friends and family helped. I think I posted a similar query to yours here. Also we went a little way down the path of what we would do should the news be bad ie we decided we would continue a down syndrome pregnancy and I did some research on raising ds kids but then I realized that in my heart I felt that the baby was fine and h! ealthy and I decided to focus on that feeling as much as possible. Happily that turned out to be correct and we have a sweet toddler now. Here's hoping you have a good outcome and that the wait passes quickly. been there
2003 & Earlier
Nervous about Amniocentesis
September 2002I am scheduled for an amniocentesis at Alta Bates Perinatal Center; my second child, but my first amnio. I am not typically an anxious person, but I am a little nervous about this process. I wondered if anyone had advice/experiences to share both positive and negative about their own amnio' Also, any specific experience with Alta Bates Perinatal Center' Which doctors have good track records, which should I avoid' Anything I should/shouldn't do before or after the procedure that increases or decreases the risk of infection' Thank you for your feedback! K. H.
Last April I had an amnio at Alta Bates Perinatal. Their record is outstanding, as was the care I received (except for the exceptionally long wait to see the genetics counselor). To my surprise, the procedure was virtually painless. The doctor who performed the amnio, ironically, was named Dr. Downs. Great bedside manner and when we experienced a small problem (my daughter turned toward and came close to the needle after it was inserted), he and the nurse handled it very well. An amnio is naturally anxiety-provoking, but I think you are in very good hands there! Liz O.
I was terrified when I got my amnio. I knew someone who knew someone who had a miscarriage from her amnio and I was so scared. I knew I would never be able to live with myself if I lost the baby and felt like it was my fault. I had it anyway because it was important to me and it was fine. It was a very simple, mildly painful procedure. The nurse massaged my feet to try to help me relax. I couldn't relax until 24 hours had passed and I was sure my baby was fine. I went home after the amnio and stayed in bed for the rest of the day. Good Luck! Danielle
Just a couple of things to note about amniocentesis:
1) Alta Bates Perinatal Center, and the doctors there, have a huge amount of experience with this procedure, and so the usual ''1 in 100 have problems'' is actually an overestimate for this particular center; your risk is less there.
2) This from my personal experience: although you hear very often that the procedure is just a little pinprick, it can in fact hurt quite noticeably, especially if you get a uterine cramp as the needle goes in. If this happens (it happened to me), don't panic. It doesn't mean any sort of complications are happening (I had no trouble at all and now have a healthy son). Karen
I can understand your being nervous about your amnio. The thought of a needle being inserted into your abdomen can cause sleepless nights. I never had an experience with Alta Bates. I had an amnio done at Kaiser Oakland and I must admit it was done very professionally. I was 39 when I got pregnant which put me in the category to get an amnio. Before the procedure I was assigned to a genetic counselor who explained genetic disorders and the entire amnio procedure. When the day arrived I was a bundle of nerves. At Kaiser Oakland, only a few doctors perform the procedure so they can become proficient. When I went in the room and was prepped by the nurse (swabed abdomen with betadine), the sonogram machine was on and the room was dim. My baby was no where near where the needle was to be inserted. When the doctor came in, he washed his hands, looked at the sonogram machine to make sure the baby was out of the way, took an ink pen and and marked on my abdomen where he wanted to insert the needle, inserted the needle into my abdomen, withdrew the amniotic fluid and was gone. While he was inserting the needle, he stood in such a way so I couldn't see the needle, but I was told it was very long. I tensed up and he kept telling me to relax. The procedure took less than 5 minutes. The doctor was in and out of the room so fast I said, ''Was that it?'' I must say that nothing goes through the navel, despite what a lot of people think which is probably why some people don't get an amnio. I was glad I had the procedure done because my previous pregnancy ended in miscarriage so the amnio gave peace of mind that everything was going to be ok with my pregnancy. I think that waiting for the results is the hardest because you have no idea what's going on. After the procedure, I went home and rested. If you want to know the sex of your baby, this is the way to find out with accuracy. My results came back in 5 working days and I had a healthy baby girl who is 2 years old now. It's easy for me to say, but try to relax and just think about your healthy bundle of joy that's on the way. Good luck to you. Cheryl
The fear I had about the amnio was worse than the procedure itself. For me, the needle going in (and being in) felt like a pinch that lasted no more than about 10 seconds (one-one hundred, two-one hundred, etc.) Breathing helped, like the 1st stage Lamaze breathing. I had my amnio May 2001 at Alta Bates Perinatal. I don't remember the dr.'s name, it was a woman with short hair. Before we started, I asked her about her background, and she told me how many of these procedures she's done--it was reassuring. The other thing that really relaxed me was the detailed ultrasound that was done before the amnio. We learned that we were having a girl, and got to see her beautfiul head and body, and to watch her move around--she even waved at us! It was a very moving, emotional experience. So I was in an amazingly calm, happy place right before the amnio. This was in marked contrast to the fear/anxiety/dread thing that I went through in the terrible weeks before my appt. It all turned out fine, we have a healthy daughter. Good Luck
I just had an amnio about a month ago at the Perinatel Center on Telegraph which has recently merged with another one and is now called East Bay Perinatel (instead of Alta Bates Perinatel). I, too, was incredibly anxious about the procedure and would offer this advice. I did the genetic counseling part a few weeks before I had the procedure (rather than just before)and that gave me a chance to ask a lot of questions in advance. Also, while there, I asked the genetic counselor which doctor she would want to perform the procedure on her sister or best friend which provided me with a little insight (reading between the lines)although she remained pretty diplomatic in her answer. If you cannot schedule the counseling in advance and get your questions answered, call the center up and ask for information/statistics about the doctor who is scheduled to do your procedure. You can also get the website address which contains the background of each of the doctors.
I tried to get Dr. Marinoff for my amnio, but he was not performing them during the timeframe that I need to get mine done. I was assigned to Dr. DePalma and learning that he had more than 10 years experience and seeing his credentials on the website provided me with some comfort.
Regarding the procedure itself. I tried to focus on the fact that it would be really exciting to see the baby for so long during the extended ultrasound and to think of the procedure itself as just a small piece of it. Based on a friend's advice, I had my husband gently rub my feet during the procedure and tried to focus all my energy on my feet during the needle part. I did not watch the monitor for the needle part. The procedure itself was slightly uncomfortable, but not nearly as painful as I had imagined it would be. I've had shots in the arm that hurt 10 times more. Also, Dr. DePalma told me I would feel a pin prick and then slight cramping right before I felt them and that is all I felt. The amnio itself only took about 30 seconds and the cramping feeling stayed level and never got worse. I had some mild cramping the rest of that day and stayed in bed the entire rest of the day, which I would recommend. I did go to work the next day, but tried to take it easy by moving slower and not lifting anything more than a few pounds. I did not have any spotting or fluid leakage at all. By the second day after the procedure I resumed all normal activity and all has been well.
The techinician who did the ultrasound and Dr. DePalma both were kind of on the cold-side, but for me this was okay because more than anything I wanted competence and total concentration on what they were doing and was not so concerned with their bedside manner. And they did answer all of my questions in a nice way. They just weren't warm and fuzzy at all.
Another thing to note is that when we were leaving the office,the technician said the result would be available in only about a week. When a week passed and I did not get my results, I started getting very anxious and began calling every few days. When almost two weeks passed and I did not have a result, I started imagining the worst and thinking it must be a bad result and they are rerunning it to confirm it and all other kinds of negative thoughts. Anyway, my results came out 14 days after the procedure and everything was fine. So don't worry if your results take that long too.
On a bureacratic note, before you go in for the amnio, make sure you have the authorization number for the procedure from your OB's office. My OB's office said there have been some communication problems since the merger and sure enough when I checked in for the procedure they did not have the authorization number and it was helpful that I had it.
Good luck. I hope this helps. You can contact me below if you want any more info. Whitney
Amnio shows markers for Downs Syndrome
April 2002My amnio results came back with a suggestion that the baby could be Downs Sysndrome. My husband and I have talked about this a lot and have decided that we will not terminate the pregnancy. But I am worried about what is involved in rasing a child with Downs. Does anyone have experience with this?
here' s a link to an excellent resource in the form of a message board. These women have (between them) been through everything and can answer questions w/o making ''judgements''. They helped me in your situation and were happy for me when I got back trouble free results.
http://boards2.parentsplace.com/messages/get/ppdecisions14.html Heather
Hi, my daughter asked if I would respond to you -- I used to work in the field of advocacy for children with disabilities -- There is a network of family resource centers (frcs) whose sole purpose is to offer support to families of children with disabilities. While you aren't sure yet that your child will have down syndrome, the frcs have an amazing network of parent to parent support groups and parent mentors who are extraordinarily helpful to families -- A call to any of them will get you hooked into an extensive array of parents who are raising children with disabilities -- There is also a down syndrome group that has a chapter here in the Bay area that the frc people can get in touch with. Here are the phone numbers of the family resource centers Marin - Matrix Parent Network and Resource Center - www.matrixparents.org 415-884-3535 Ask for Catherine McQuilkin
CARE (Contra Costa)925-313-0999 - Ask for Betsy Katz
FRN/Oakland - 510-547-7322 (they are in the same space as Bananas)
Any one of them will be glad to talk with you and link you up with parents who can give you lots of great information. They are all very careful about keeping information confidential and protect your privacy. Most of the staff of the centers are also parents of children with disabilities - Catherine McQuilkin at Matrix has a son with down syndrome.
Woodbine House has a book called, simply enough, ''babies with down syndrome'' that might also be helpful to you.
Best of luck Katy's mom
My sister has a son with downs syndrome, who is now almost 10 years old. She was 32 when she had him, and had no indications that he might be anything but normal. The shock was severe, and it will always be something she feels incredibly sad about. Her son is a very happy and loving boy, with a sense of humor and a large appetite, but in many ways he still behaves like a toddler. She can't see when he will achieve compentency or independence in any of the activities we take for granted in a typical child, or when she can look forward to a decreased level of diligence in his care. She has an older son who excels in everything, and a wonderful supportive husband, and day to day life is pretty good. But there is no doubt that she carries extra sadness for this child, who doesn't have any real friends, who hates changes in his routine, who lives in a dream world of his own much of the time, and whose greatest delight is meal time. That said, the child gets and receives a tremendous amount of love from his family, his teachers, his brother's friends. I think it would have been easier if she knew while she was pregnant, and had the chance to make a choice. A concerned sister
I have a degree in Special Education and taught school for a number of years. The kids with Down's that I taught were almost all so loving and wonderful. They usually brought joy to anyone associated with them. While they were behind academically, they were generally happy with life and a pleasure to be with. I got a lot of hugs!
Several of the parents said that in some ways they considered it a blessing that they had their kids. It gave them a whole new joy and a new perspective about the important things in life. I should mention that the kids I worked with were considered ''mildly to moderately'' mentally retarded. There is also the ''severely'' retarded category which is obviously a more difficult scenario.
That being said, having any child is difficult sometimes and having a child with a disability can be much more difficult. If you end up getting your amnio results back and you have a decision to make, decide what you and your husband want to do in your hearts and then go with that. You should not feel pressured or influenced by anyone else, it is your decision.
I would also recommend that any parent of a child with Down's Syndrome contact school officials at a very early age. Be aggressive to get the extra healthcare and schooling that you will need. Early intervention has been shown to be tremendously helpful (i.e. a preschool class set up to deal with kids with disabilities, early speech therapy). I did my student teaching in a preschool disabled class and it was a nurturing, happy environment that the kids and the parents loved.
You may also have a ''normal'' baby. Either way you will be blessed! Kathleen
Our eight year old son has Downs syndrome, and he is a wonderful part of our family. I think the Bay area is a terrific place to raise a child with any special needs because of the great variety of resources available. Our son is in second grade at our neighborhood school and doing very well. He has to work harder than his little brother to learn things, but he is reading, writing, full of energy and stories just like any other little boy. I wouldn't trade the experience of raising him for anything in the world. I have learned so much from sharing my life with him. I think there are much harder disabilities to live with in this world than Downs, it just happens to be something we can test for before a child is born. After being with my son, I would never consider giving up a child because they had Downs, but many of the doctors I spoke with (although they had no personal experience) were very discouraging about the syndrome. I urge you to contact me, or an agency like the Family Resource Network, Downs Syndrome League, etc to meet parents and children with Downs Syndrome and learn more. FOSC
I totally applaud your decision to continue the pregnancy in the case of a down syndrome baby. My husband and I decided not to do any testing during our pregnancy even though my cousin (my father's sister's child) has down syndrome. You will have a beautiful baby and a beautiful child and - I promise you - will feel blessed by your decision. Not easy work at all, but so rewarding if you embrace the challenge. If you want to read a fabulous account of having a down syndrome child, I really encourage you to read the biography, ''Expecting Adam,'' by Martha Beck. I recommend this book to just about everyone I know anyway, because it is such a page-turner and so beautifully told. Good luck to you. julie
First- Don't panic! I (and my next-door neighbor) had supposed ''markers'' for Down's and both amnios came up normal- We have both given birth to a normal, healthy boys. I have heard from many sources that these tests have a lot of false positives, and that the VAST majority come up negative in the amnio. It is admirable that you're planning and thinking of caring for a special child, but the odds are that you don't need to worry about this just yet. Anonymous
Doctors who do Amniocentesis
October 2001 I am a concerned first time pregnant woman. I would like to ask if anyone had experience or heard about the following doctors who do Amniocentesis. I am especially interested in knowing how experienced these doctors are and what is their rates of complication. However, any information you have about them or other excellent prenatal specialists will be greatly appreciated. Thanks!
From Alta Bates Perinatal Center Dr. Janet Goldman, Dr. David Marinoff and Dr. Eric Spitzberg
From Perinatal Diagnosis Center in SF and Marin Dr. Denise Main.
From Bay Area Perinatal Center Dr. Paula Melone
Recommendations received:
Amnio after low AFP result
March 2001I just got my results from an AFP test, and they came in borderline low. My OB says I have a 1 in 150 chance of having a baby with Down Syndrome. I'm considering having an amnio. Has anyone had an abnormal result on the AFP for one child and not with others? I know my dates are correct, and my previous two children both had negative AFPs. I'm trying to figure out if this sometimes happens with later children and if the baby could still be fine. Thanks!
Get the amnio. I've been there, and it's better to know than not know.
I am in my second pregnancy and had a normal AFP the first time and a the situation you describe the second time. As I am over 35, it was explained to me by both my doctor and the folks who did the amnio (my husband and I had agreed ahead of time that if the result was higher than normal we'd do the amnio) that false positives are common in the AFP once you're over 35 (I was exactly 35 the first pregnancy). Anyhow, we went ahead with the amnio just to assure ourselves that everything was okay. The numbers on my test showed a higher possibility of Down than yours and everything came back okay. In retrospect I realize that my needle-phobia and general distaste for invasive procedures made this process more stressful than it would have been if I'd just done the amnio right away, but it wasn't that bad. The odds of your baby having Down are pretty low, if you look at it from the 1 in 150 perspective (as I'm sure you have). Jody
I had a similar experience with my healthy boy, as did my sister with her third child (a healthy girl). The AFP is notorious for false positives. We both had the amnio which was a HUGE relief for us, as I am sure it would be for you. Melissa
I was 35 y.o. when I had my first child and had declined an amnio because I figured I had led a relatively healthy lifestyle. Then I received a low AFP result. It was my understanding that there were a number of false positives on the low side. Although the test is designed for spinal abnormalities, researchers had noticed a higher incidence of Downs syndrome among women who had low AFP results. So, the test is not really designed to test for Downs syndrome. Anyway, I decided to proceed with the amnio because I wanted to be psychologically prepared in case my child had Downs syndrome (which she didn't), but it provided me with some peace of mind regarding expectations. If you want the amnio though, you should speak up right away, because if I recall correctly, I was barely able to schedule it within the appropriate window of time after I received my AFP results.
This is such a personal issue, and it depends on how you feel about having a DS child in your family. But if I were in your shoes I would want the information. The amnio is a fairly simple and safe test, (I have had one with both my pregnancies) and the results are accurate. At the least, you will feel relieved upon hearing the results. The other end of the spectrum will allow you to have some choices. Make some decisions or make the necessary preparations. Good luck, my best wishes are with you. Lindsey
The AFP test is very flawed -- it has an extremely high false positive rate! With my first child (6 yrs ago), I had a low AFP result. My insensitive doctor referred me to a high risk doctor for an amnio, wouldn't comment on the false positive rate (which I did not know at the time), and basically scared me that my child could have down syndrome. I had the ultrasound and amnio the next day, and all was fine. The amnio was a bit scary and I don't know that I would have chosen it again if I had more information about what a lousy test the AFP is!!! My second child's AFP test was within normal ranges. Good luck Jen
I had borderline AFP results with my third child: They were high indicating a risk for neural tube defects. I had a sonogram and my (self reported) dates were off significantly. They can check for most NTD via sonogram, so we had a fairly clear rule-out, so it's not quite the same deal.
The thing to remember about the AFP is that it's almost entirely based on statistics, and the stats change with age. The 1/150 chance you have for a Down Syndrome child with the exact same AFP results if you are 35 goes down to something like 1/500 if you are 25. It's well worth looking at your actual numbers and working from there.
I did a fair amount of research on this topic, so if you're interested in looking at some of the stuff I looked at, you can get in touch with me. Be warned though that a lot of it was very technical and I needed help from a statistitian to interpret it intelligently.
To answer your question, since the AFP is based on your age, and that, presumably is older than when you had your first child, it is absolutely possible that it could be different enough to cause a low result.
You should also talk to a genetics counsellor if that sort of person doesn't irritate you... I think they are covered by the California Department of Public Health's Expanded AFP program. The one I saw was affiliated with East Bay Perinatal at the Alta Bates Center on Telegraph in Berkeley. They will take a genetic history and have access to the numbers. They often want to do an amnio at the same time, which after they did the sonogram on me I declined. The good news: I had a perfect baby last August. Myriam
AFP tells you only the probability of the baby's abnormality. While it is quite possible for your baby to be totally healthy with that level of AFP, you might want to consider doing an amnio if you really want to be sure. AFPs often show false positives. Each pregnancy is individual so having had a clean test doesn't mean that you won't have a false positive in a subsequent pregnancy. Chances are everything is fine and the amnio will reassure you. If, however, the positive turns out to be real, then there are many resources for you here in the Bay Area. Should you choose to terminate and would like information on support groups, therapists, etc., please don't hesitate to email me. Ayelet
I had a very similar AFP result (indicating a 1 in 110 chance of Down Syndrome), and our baby was born without Downs. (I don't actually want to say she was just fine, as if there is something not fine about Downs children.) We decided not to get an amnio since we knew we would have the baby no matter what, and there is a chance of miscarriage from the procedure. We did get a Level II ultrasound, which is a long, detailed view that, as I understand it, is getting very reliable at detecting Downs.
In my experience, it was important to think carefully about what I'd do with the information if I had it. I had originally decided when I got pregnant that I wasn't going to do an amnio or other genetic testing and then for some reason got the AFP, which seemed more innocuous to me. When I got the result I felt very strongly that I wished I hadn't gotten the test -- I worried much more about the pregnancy after that, and I felt as if the testing created a strange, contingent quality to my pregnancy.
In any case, the AFP is a screen test, resulting in a huge number of false positives. When I asked our genetic counselor how many of the women tested showed some abnormal AFP result, she said about a third. I think it's also worth noting that statistics can be very misleading. In my case, the test results were presented as if a 1 in 110 statistical likelihood of Downs was a high incidence, while the 1 in 100 chance of miscarriage resulting from amniocentesis is presented as a very low risk. In your case, 1 in 150 translates to a 99.33% likelihood for no Downs. Alysson
I think it's important to correct some misinformation about testing. The risk of miscarriage from amnio is NOT 1 in 100. It is anywhere from 1 in 200 to 1 in 300 depending on where you have the tests done. CPMC and UCSF both have very good, very expert facilities. Furthermore, the AFP is not a bad test. It is simply a screen. As such, there are necessarily more false positives. As someone who terminated a pregnancy due to a genetic abnormality once, I myself no longer do either the AFP or the amnio. I go directly to CVS, a test I find personally more acceptable as it is done at approximately 10 weeks. Again, both CPMC and UCSF have wonderful facilities and expert physicians and I would never go anywhere else to have that test done. Ayelet
I second the endorsement for a CVS if you think you're at higher risk for genetic abnormalities or if you don't want to wait for an amnio. The CVS is becoming much more common, and if done at a reputable center with experienced physicians, the risk can be no greater than that of an amnio. As an older first time mother, I had one at 11 weeks with no complications at all, and far less discomfort, so I'm told, than one has with an amnio (a CVS is usually done vaginally--no horse needles). However, I think it's important to point out that the AFP is still recommended for women who've had a CVS, since, unlike the amnio, it can't test for non-genetic abnormalities such as spina bifida and other neural tube defects (as my genetic counselor put it, for holes in the baby). My understanding is that if the AFP comes back marginal or worse, then an amnio is still recommended to check for neural tube defects etc.
Friend's Anxiety awaiting amnio results
Nov 2000A friend of mine is pregant with her first child at age 36 awaiting amnio results. She just heard bad news of another (younger) friend's recent birth of a second child. Without opening a huge discussion, what was the best advice and/or words of comfort you received regarding anxiety over a child's health? Sometimes hard facts and science works best, other times it's more spiritual. I find for me it's a bit of both. I'm really curious to know what helps others. Thank you.
When my amnio results came back with my worst fears confirmed (and I chose an abortion), what I really wanted to hear from people were words that confirmed my sorrow, my loss of a family member, loss of certain dreams and projections of my future. What I did not want to hear were words affirming the importance of a woman's right to choose (sure I felt it, just didn't want to hear it), words affirming the difficulty of the choice process, etc. The very worst words I heard were from my best friend: I'll bet you don't feel pregnant anymore. (I forgave her; she's never been a mother.)
I had my first child when I was 38 and my 2nd at 42. I found my best comfort was education. I knew what the odds were for abnormalities, but I believed my babies would be normal. Though I don't really remember too well, I don't think I worried about results. I think having a positive attitude and whatever prayer works for your friend is probably her best bet. What is, is. It's the waiting that's difficult....the worry and anxiety is not going to change the result, so it's a lot healthier for mom and baby to try to be patient and positive as the time passes. I decided that if there were problems I'd deal with them at that time. I've known many women having babies between 35 to 45, and though this doesn't say anything specifically about your friend, of all the women I've known of only 1 person in 9 years has had an abnormal amnio. I hope ;your friend can relax and try not to worry. Good luck to her. June K
Not helpful for me: comments like they can do so much with hearts these days, you will really have to work on your relationship because, you know, families that deal with these sorts of things are more likely to break up--a true quote, from my MIDWIFE no less, and well, she won''t be a soccer player, but she'll probabably do just fine. My advice regarding this topic is if you don't know the family well, say nothing. Allow them to bring it up, then ask if there's anything you can do to help them. I received messages from people I hardly knew regarding my daughter's condition, and often they came just when I had myself together & then I'd fall apart all over again. As the family becomes more comfortable with their child's condition, they will open up more...but for now, unless they are super familiar, I wouldn't say anything. You didn't specify whether the problem your friend's child had was permanent or correctable, so the focus of what you may wish to express may be somewhat different. In a case like ours, where my child's condition is rare and scary, but likely to be treatable, it was helpful for me to hear--after awhile--what a good mother I am, good family, happy child, etc., and how strong she is. I didn't want people to treat my child as different or special because I don't want that stigma projected onto her. The greatest comments I hear now are how wonderfully she's doing (which, thankfully, she is...), and comments on things other than her health. People dealing with these types of things are often struggling to create a sense of normalcy for themselves. Their children aren't only ill, they're growing up and changing, and bringing joy to their families, too. Try to notice these things and comment on them. I felt a lot of guilt around my baby's heart condition, and one thing it helped me to consider is that we all have our own destiny--even our tiny ones get their own path. This helped me to alleviate the guilt that somehow I had caused her problem--which most mothers feel when something like this happens, even if it is not true. One more thing--remember that no matter how tactful, respectful & supportive you may be, the family may not take your words in the way you mean them. Try to be understanding if they freak out on you (which I did several times, despite the fact that people were genuine and well-intentioned). They are going through the most difficult thing, and should be given a world of latitude when it comes to their responses to just about everything. Good luck to you, and to them. Elizabeth
My own experience as a first-time mom at 42, and second time at 45, was great. Both kids are terrific, healthy, and doing fine. Definitely go for early amnio (available at UC Davis) or CVS (at UCSF) to allay your fears. Then remember that our bodies were meant to have healthy babies, and the odds are greatly, greatly in favor of that occurring.
My advice, having a-waited CVS results twice, is to help her not think about it, and just wait for the results. There are many more cases where the fetus is fine than there are cases where the fetus is not. But, one always thinks that they will be the unlucky one. When the results are known, you will either have to do some serious talking, or the worries will evaporate. Just help her keep busy this week. -Lisa
I gave birth to my first child at 36 (last year in fact). I didn't really get any specific advice that made the waiting easier, but my friends and family gave me the impression that they were sure everything would be fine, so I followed suit. Of course I wondered what we would do if something was wrong, but that was never at the forefront of my mind-I was too excited about being pregnant to worry. I also heard horror stories about friends of friends having babies later in life, but there were at least 5 success stories for every one bad one. In fact my 43-year old cousin in law recently gave birth to her second child-a healthy baby boy. 36 may have been old to have a baby a decade ago, but I don't believe women who have taken good care of their bodies and have gotten continuous prenatal care are not at as much risk as the statistics and doctors seem to say. I think alot of our popular culture revolves around perpetuating fear (via 20/20-esque TV shows, newspaper stories, etc) because that's what sells. If your friend can ignore the media and other people's unfortunate circumstances and listen to her body, she might feel better about things. I think the best thing you can do for her is to be supportive, optimistic and excited for her! Angelica
Amnio for high-risk pregnancy?
Sept 1999I want to discuss my very important problem: Who has passed through amnio, please, share the experience or who has decided not to do it, share the advice. My doctor is very concerned about doing it because of being in high risk pregnancy. But I am also concerned that being older than 38 may be it's better to do it. Thank you.
I just went through the amnio dilemma, and finally decided to do it. First pregnancy, age 33, no worries. Second pregnancy, following a miscarriage, age 37, all of a sudden they talk high risk. Remember that the risk factor is a statistical rate of all pregnancies, yours is unique, you need to decide what's best for you. I was very afraid of miscarriage related to the procedure. Some other things I thought about: if there is something wrong with the baby, would I abort? At what level of wrong? At 17 weeks gestation that's a significant decision. I know quite a few people age 37-40 who decided not to do it because they it wouldn't change their minds about keeping the child. I thought about the quality of my older daughter's life if a significantly impaired sibling came into the picture. Also, the income/career factor. And bonding; it was a lot easier to feel close to the little thing after seeing detailed pictures via ultrasound and finding out that, genetically speaking at least, things seem ok. Side benefits (at least for us): found out that it is a girl, (and my daughter promptly named her) and we could start planning for the future more easily. The physical experience: not pleasant, not horrible. The scariest thing was seeing the needle on the ultrasound and watching the baby's little head bob closer to take a look. If you decide to do it, please remember to take very good care of yourself for at least 3 days. Good luck!
Two things: 1. my wife had one b/c of her age at pregnancy. The procedure proved quite unpleasant and invasive, something made worse by the calousness of the MD performing it, and by having had to sign liabilty release forms in case accidental delivery, and the loss of the baby were to occur. We decided that, even though she is yet older, we would forgoe the procedure were she to become pregnant again. To a large extent, I think that we were pressured into it by Kaiser for some reason (are they afraid of having to provide care for babies born with abnormalities?) 2. I read somewhere that a new procedure has been discovered that is far less risky and invasive and that fills the same purpose as an amnioscentesis. I am sorry I can't remember more, but check around.
I was 37 when I became pregnant and was therefore advised to have an amnio or CVS (i think it stands for chronovilli sampling or something vaguely like that). The latter procedure can be done earlier in the pregnancy, but sounded more invasive to me (entry route is not belly but vagina) and also (I think) carries a slightly higher miscarriage risk. Someone also told me that there is a greater risk of false positive results for birth defects. So I opted for amnio. I requested Dr. Chueh at Alta Bates Perinatal. She was great! The worst part of it was the gallons of water I had to drink for the ultrasound - having to pee so badly made me very cranky. (You are permitted to pee before they actually draw the amnio fluid THANK GOD). (I also learned from a friend who is Dutch that in Europe they DON'T want you to drink water before ultrasounds- this is a U.S. thing. Another way to torture women, I guess...) The amnio procedure was not uncomfortable at all - about like getting a flu shot. The other very difficult part was waiting for the results. Being very pro-choice and rather pragmatic, I assumed I would of course abort if there was a serious problem with the fetus. After seeing my baby happily boing-ing up and and down in utero, I would have had a much more difficult decision to make had there been any problem (there wasn't). I think, though, that it is really better to know one way or the other. If there is a problem, you can prepare as much as possible. It is a very personal decision, though. Also try not to let the genetic counseling scare you too much. Yes, there are lots of possibilities of things that can go wrong... both before and after your baby is born. Focusing on them can make you seriously crazy.
I have a few opinions to share regarding amniocentesis. It seems that every woman l know who is having a baby after age 35 just assumes that she must have amniocentesis. My OB encouraged me to have one when I was pregnant with my daughter in 1994. I was 35 then, and I have an aunt who has Down's Syndrome. (My grandmother gave birth to her after age 40.) My husband and I decided that we did not want amniocentesis for a couple of reasons. It is an invasive procedure; there are risks, and we did not want to take those risks; and since we would not abort if a defect was found in the fetus, we decided we did not need the test. My family has a gene that causes missing joints in the fingers and toes. This is a minor defect, but having it gives me a different perspective. What if I was a person who wanted to make sure that my fetus was so perfect that I just had to test for this gene? That is, of course, if there were a test for this gene. How far would I want genetic testing to go?
I went ahead with the AFP test (Alpha-feto protein) because they just tested the mother's blood. My OB called and said that my result was in the range that ruled out neural tube defects but could indicate Down's Syndrome. She recommended a dating ultrasound and an appointment for amniocentesis. I burst into tears, thinking something was wrong with my baby. I went to the ultrasound with great anxiety and I was in tears while I was on the table. I was afraid to look at the screen. When I did, the technician was scanning the head. I say a two perfectly symmetrical hemispheres of the brain, and a message came to my mind, Everything is okay. I told the technician that we did not want to know the gender. She said everything looked just fine. Afterwards, we discussed amnio again and decided it was time to jump off of the pre-natal testing conveyer belt. We did not do it. We did some looking into AFP, and found some information that stated that many female fetuses can give the AFP test result that we received. That is interesting, since I did give birth to a very healthy girl in May 1995.
Since this experience, I have developed a stronger conviction that the womb is a scared place when a baby is growing in it. I am not afraid of needles, but the thought of sticking a needle into this sacred place just does not feel right to me. In addition, I realized that there are no guarantees when you have child. There are no tests that determine whether your child will be healthy his or her entire life. There are no crystal balls that show you the accident the child might have in kindergarten that leaves them with a permanent disability, and there is no way to predict that your child might be a really awful person to raise. A woman I worked with said it well, It my day, you got what you got.
There is a procedure called chorionic villus sampling (CVS) that is performed earlier than amnio, at about 10-12 weeks that takes a sample from the chorionic villus (of fetal origin attached to the placenta? I don't know the specifics) and has a fetal loss rate similar to amniocentesis. There were studies that implicated limb defects when this was performed earlier than 10 weeks, but the occurrence is about 1 in 3000. Advantages are: early diagnosis before extensive bonding, earlier peace of mind.
I had amnio with my first child. I turned 36 a few months before his birth, and my advanced maternal age was the only real indicator of high risk, and therefore the reason that we had the test. It was slightly uncomfortable, physically, but mostly emotionally - what would we do if... Even as high risk (+35 for first pregnancy) statistics were still on our side, and everything was fine. We were advised to use an MD who specialized in these procedures - many OBs can do it, but if it's basically all they do, they are more experienced. We used a perinatologist, but this was not in California, so I can't recommend anyone. He used a lab that got us results in just one week, which was great, but I don't know how much choice you have with that.
For my second pregnancy, (age 40) I had CVS (chorionic villi sampling - not sure of the exact spelling) in which they take a bit of the placenta rather than the amniotic fluid. It gives you the same genetic information and can be done weeks earlier than amnio. (I forget the exact time, but something like 8-10 or 12 weeks rather than 14 or so.) We used the same physician. It was a great relief to us to be able to do this test so much earlier - able to really celebrate being pregnant, no longer walking around not wanting to talk about it just in case... The procedure seemed slightly more uncomfortable than the amnio, but I mean slightly. I know other women who had both and thought that the amnio hurt more, so who knows. In either case it takes literally seconds. It was like a little pinch. Personally I would advise against watching the screen as the needle goes in, but I'm pretty squeamish. My husband watched.
My husband drove and I laid low for the rest of the day both times (as much as you can with a three year old running around) and didn't experience any ill side effects. Maybe slight cramping, but nothing that I would have noticed, if I hadn't been looking for it. At the end of the day, neither procedure was physically uncomfortable enough to not want to do it, and the peace of mind it brought us was great.
These are both invasive tests, but I have no history, or family history of miscarriage, so no one was advising I not do it for any reason. I also know several people who didn't have either test, even post 35 years. It was not clear from your letter, but it sounds like your doctor is advising you not to do it, because he/she's worried about complications - I believe it carries some risk of miscarriage. I would ask your doctor more details as to why you should or shouldn't do it, given your high risk status, and if you feel he/she can't be objective, get a second opinion from another medical person. Good luck.
Mine was a very high risk pregnancy, due to many factors. I was 38. It was my first pregnancy. I had some specific health complications, among them, endomitriosis. An amnio was being considered, but my doctor was wary of it for the same reasons I am sure your physician is pondering. What was decided was to do a rather new procedure (then), which is called a Chorionic Villus Biopsy. You get the same information, but but the procedure is done sooner (I think 8-11 weeks.) What we wanted to avoid was going the full 21 weeks to find out about the results of an amnio. The reasoning was that if the results indicated that the pregnancy had to be aborted, to have to go through that and then another, subsequent pregnancy would be life threatening to me. (It sounded a bit alarming at the time it was intoned, but as the pregnancy wore on (and on and on and on) it began to ring true). The Chorionic Villus Biopsy, evidently, is thought to be less risky in some cases.
AND THEN: It turned out to be twins. What we wound up doing was flying to Philadelphia to the only place where the CVB was performed on multiple pregnancies (in 1986). Everything went swimmingly. Our twins are 12 years old now, and I'm worrying about Junior High Schools instead of Chromosome configuration. Much ado about a procedure. But why not talk to your ob-gyn about the CVB. Maybe it would be adviseable. It was fairly painless, considering. The sample is taken vaginally rather than through the abdomen. All the genetic information you get from an amnio can be gotten from the CVB. Ask your ob-gyn. This brings out the cynic in me, this does. I wonder if ob-gyns are pressured not to mention the Chorionic Villus Biopsy because it's newer (not experimental, just newer) and not as widely practised, requiring specialists. (Rats. I hate HMOs.) Good luck. and congratulations.
I underwent a similar procedure, CVS, which is slightly more invasive and thus more risky than amnio. I did it because I was urged to undergo amnio by my doctor since I was an older mom (38 going on 39). Her concern seemed to be the possibility of genetic defects, and Down's syndrome was mentioned most frequently. In retrospect, I wish I had not gone with the CVS (I chose that procedure because I was leaving the country for a month and would had to do something that would produce results more quickly than amnio). I don't think I should have undergone amnio, either. I think one needs to consider carefully a few essential questions: could there be genetic defects detectable through amnio that would lead you to choose an abortion? Under what circumstances would you choose to terminate your pregnancy? I know that I would not have chosen to terminate my pregnancy if I had found out that I had a Down's syndrome baby, so why did I choose CVS? My doctor persuaded me that forewarned is forearmed, but I could have simply informed myself of the possible genetic dangers in my late pregnancy and warned myself in that un-invasive way. There may be others on the list who can add insights here, but my feeling is that if a woman is quite certain that she would not want an abortion except under extraordinary circumstances, she should not expose herself to the risks and (especially in a case like yours, where the doctor is hesitant) the guilt she might feel if something did go wrong in a pregnancy that might otherwise have been viable. Good luck to you.