New to Site, Looking for info on pharyngeal flap surgery

[Mavsma]

Hi! My name is Jen. I have an almost 4 yr. old son who was born with Beckwith Wiedemann Syndrome and a cleft on the soft palate. He had the repair done @ 8 1/2 mo., and has been in speech therapy ever since. We just attended his annual cleft clinic visit, and pharyngeal flap surgery was recommended. Not a surprise he needs surgery, but just a bit nervous about it. He has had nine other surgeries for various other things, (only one for the cleft), so we should be used to it by now, but we just need a push in the right direction.

So my question is, Can anyone tell me what to expect from this surgery? The outcomes? (good and bad) We're going back to the Dr. office soon to discuss the surgery in more detail, but I would like to find out from others who have had or have children who have had this procedure done.

Thanks for your help. Jen

[Heide]

Hi Jen, sorry I am unable to be of any assistance but just wanted to say welcome to the site and all the best for you and your little one. Heide

[gc0447]

Dear Jen,

Hello. My name is Georgette Couvall (Dr. Salyer's patient: http://www.worldcf.org). How are you? Here is my Personal Story link:

http://www.worldcf.org/support_groups.cfm (Craniofacial anomalies)

How is your son doing? I want to wish him the best of luck with his upcoming surgeries. I'm sure everything will work out wonderful for him.

Anyway, did you get the Private Message I sent you? My Craniofacial/Cleft Surgeon (Dr. Salyer: Founder & Chairman of the World Craniofacial Foundation: http://www.worldcf.org) is doing a fundraiser in Chicago at the Metropolitan Club (http://www.metclubchicago.com) on Saturday, June 23rd. NFL Quarterback, Jim Harbaugh will be the Special Guest. Jim has a son who was born with a Cleft Deformity. Here is his information:

http://www.cleftline.org/story_of_the_month/apr02

If you are interested in attending, please email me (georgettecouvall@hotmail.com) your home address, and I'll put you on the Invitation List.

I'm also passing this information along to other Illinois Craniofacial/Cleft patients and their families, including the other Illinois Smiles (http://www.cleft.org) members.

Thank you so much. I look forward to hearing from you.

Sincerely,

Georgette Couvall
georgettecouvall@hotmail.com (Email)

http://www.worldcf.org/support_groups.cfm (Craniofacial anomalies)