Child with Syndactyly

I don't have a personal connection to anyone with syndactyly, but you might check out the disability studies scholar Rosemarie Garland-Thomson (e.g. her essay "My 'orphan disease' has given me a new family") who has complex syndactyly for ideas https://www.nytimes.com/2017/10/26/opinion/my-orphan-disease-has-given-…

Hello there. I just saw this post and my heart got all excited! My daughter was born with Ectrodactyly with 3 fingers on each hand, 3 toes on her right foot (we had one amputated due to the lack of bones) and 4 on her left (2 are webbed). She is now almost 9 years old and has had about 7 surgeries to close clefts, etc. She is one of the most resilient, athletic, adaptable kids I know. Feel free to reach out via text or phone. I would be more than happy to answer any questions that you have.

Danielle

925-457-7850

My daughter was born with a small sixth finger on each hand. She had surgery to remove it at six months old (rather than the binding method at birth, which was what was done to her paternal relatives with the same issue, which leaves a bump). The surgery took about 20 minutes. She was in recovery for about 90 minutes from general anesthesia. Then we went home and she had bandages on her hands for about a week. We never considered any other course of action and everything went fine. We had this done at Children's Hospital Oakland.

Hi, I am not a parent but can speak as an Occupational Therapist working in early education. I have worked with a number of children in their recovery after surgery so not a part of the decision whether to do it or not. 
 

The children I have worked with (they have been anywhere from 12 months-3 years) have gained dexterity and adapted beautifully to having more functional use of their hands. 

Hi Juliana and Seph,

I have syndactyly of two of my toes on both feet, not completely fused but higher webbing on one than the other. I've always seen it as a point of pride and it doesn't affect my walking or balance in any way. If I were in your child's situation, however, I think I would have wished for surgery when I was young enough not to remember too much. I would discuss the possible outcomes with your child's doctor and make the decision yourselves.

Best of luck.

Hi there, I don’t have experience directly, but I have a dear friend who is nearly 40 with this who may be willing to talk to you and she’d his perspective as an adult that did not have surgery as a child. Let me know if you’d be interested. If you could email me at Lori.anahata [at] gmail.com, I’ll pass along your email to him. 

best of luck with your decision-

lori 

Hi,

My son had bi-lateral syndactyly. Pinky and ring finger on both hands shared a bone for most of the way down starting at the top. We were not sure we wanted to do the surgery, however if the fingers share a bone they will likely become very curved over time and basically unusable.  My son had surgery at 11 months and, well it was one of the most frightening things I have been through, I am very glad we made the decision. Even with the surgery, there is still webbing between his fingers at this point. He is now 22.  Fat what is used from the palm of his hand and skin graphs from his thigh area. We were told that at age 12 or thereabouts, he would need to have another surgery to correct the webbing that would have grown back by that age. My son was adamantly against having the surgery so we let it be. He does have some webbing even now and there are things that are not as easy for him to do, but so much better than if we had not done the surgery. please feel free to get in touch with me if you want more information.  I do realize things might have changed in the 22 years since we did the surgery but I can share with you how it has gone since then.