Ear birth defects and doctors

We had a son born with this condition as well as atresia ( no ear canal). After much research and meeting with surgeons there is only one surgeon to go to. His name is John Reinisch and he is at Cedar Sinai in LA. He comes up to Palo Alto periodically to do joint operations with a Stanford doctor. His office number is (310) 385-6090. There is no one with more experience with this condition than him. People travel from all over the world to see him. I can't recommend him highly enough. You are welcome to contact me directly for more specific information. As far a a community look at http://earcommunity.org/ they are a great resource and have open forums about microtia ( malformation of the outer ear). 

Hey there! Congrats on your girl. How old is she? My daughter was born in 2014 with bilateral microtia and atresia. She has a fairly large pinna on one side, smaller on the other. Both malformed with no ear canal. She uses two Ponto Plus bone conduction hearing aids on a soft band and tests within normal range (aided). She's doing really well and gets a lot of support through the Early Start program. We have Kaiser and our docs are in Oakland. If you haven't already, there are a couple of Facebook communities that are very positive and GREAT sources of information: search for BAHA Kids Club World Hearing (kids and babies who use bone conduction hearing aids, a wonderful resource for useful info), and Ear Community (tends to be more emotional support and happy stories, etc). In terms of surgeons, you can find a lot of info on the Ear Community website (http://earcommunity.org/microtiaatresia/surgical-options/global-list-of…). I don't have specifics to offer on surgery bc ear construction usually comes when they're older. A lot of talk about surgery sort of falls on either side of "we are going to do constructive surgery as soon as possible" or "we're going to wait until the kid is old enough to participate in the decision". So it's sort of a sensitive topic in the microtia circles. Anyhow, please ask the moderator for my email if you'd like to get in touch and I'd be happy to chat. [Note from moderator: just click on the poster's name and you can email her through our website.]

How old is your daughter? My girl was born with a folded ear. I was told no worries, that it would unfold itself. Apparently, she was laying up against part of me in the womb that folded the upper top/side of the ear. It took a few weeks and it popped right back.

If it's a permanent condition, wait a bit and see what your kid looks like with hair. My kid was pretty much bald until @ 2, when she finally had enough to cut. Prior to that, her ears were HUGE, just a scaled down version of my husband's massive, hairy- lobed ears. But once she got hair, it was fine. She could have fun with piercing for sure- 5 holes could fit in that meaty lobe! 

And then, only then, consider surgery. Unless the issue impedes hearing, leave it be for acways down the road. My 2 cents....

I'm so sorry for you and your daughter. I can recommend UCSF Center for Craniofacial Anomolies. Dr. Bill Hoffman is an amazing plastic surgeon and the pediatric otolaryngology department is top notch. The center is a multi disciplinary team with a speech pathologist and access to a pediatric geneticist. As the social worker for the team I witnessed some amazing success stories over the years. 

You're off to a complicated start. I hope you will be able to share this story with your daughter when she is older and has forgotten about this time.