Hi there!

While I can't give any medical advice I can offer one simple suggestion about educating professionals you may come across.  You can always steer the doctors and specialists to this web site as well as The Velo-Cardio-Facial Syndrome (VCFS) Educational Foundation, Inc.

You can print out information from our site to give to the doctors to read.  I think the more they know and understand about your daughter's condition the better.  And if you are unsure of any medical procedure you can always get a second opinion.

I know this all must be so frustrating and difficult to deal with.  Thank you for reaching out here on Friends of Quinn.

You want to make sure she does not have a bifid uvula or some other issue where the soft palate muscles are weak. My ENT who put tubes in my son told me NEVER to have my son's T& A removed because it will affect his speech and make it very high pitched and nasal and may require very challenging surgery to repair. I went to another ENT at a hospital where they specialize in pediatric ENT issues when my son continued to have ear infections after the tubes were removed and he wanted to do a T& A. They ALL want to do it because that is how they make money.  I told him he has a bifid uvula and he said well if he ends up with a speech problem we can do surgery to fix it. I left there and never went back. Then I called a family friend who is an ENT, He said I should never have my son's T&A removed. The surgery to fix speech problems is very difficult and sometimes doesn;t work. He prescribed prilosec and nasonex because he said the problem of ear infections is usually caused by relflux      ( which my son did have ). I kept my son on the regiment for a year and all ear issues went away.  My advice is ALWAYS go conservative when you can with kids ( in other words avoid surgeries or invasive procedure)and especially kids with VCFS.