Succesful cleft palate repair

[babyface]

Hi was just wondering if anybody has had a sucessful palate repair,(obviously or they wouldn't be bothered with surgery), its just that every story I hear is not good somebodys palate has broken down or they have fistulas. My son had his surgery on tuesday and as you can understand I am very anxious, dont want to have put him through all that for it to have to happen again! I think I just need a ray of light at the end of the tunnel! Also at what age do they need to see a speech therapist for maximum benefit, do all children with cleft palates need to see a speech therapist? Thanks for any replies

[BRANDI - TX]

MY DAUGHTER HAD HER PALATE SURGERY AT 8 MONTHS OLD. SHE IS NOW 16 MONTHS OLD AND HAS HAD NO PROBLEM WITH HER PALATE. I AM GETTING HER IN WITH A SPEECH THERAPIST NOW. WE ARE HOPING THIS WILL HELP HER CATCH UP ON THE TALKING SINCE SHE ONLY KNOWS ONE WORD. THEY CHECKED HER REPAIR AFTER 4 MONTHS AND IT WAS FINE. THEY TOLD ME THAT IF IT WAS GOING TO MESS UP IT WOULD HAVE ALREADY OF HAPPENED. I HOPE THIS INFO IS OF SOME HELP TO YOU.

[Jeff Alterman]

Most cleft palate repairs are successful. To increase your chance of a successful repair with the fewest surgeries, get in contact with an experienced cleft palate team in your area. If your child has a cleft lip and a cleft palate, expect that 3 to 5 surgeries will be needed by the time your child is 18-20 years of age. Sometimes 6 to 8 surgeries are needed in the most severe cases, but make sure that your child will not end up needing 15 to 20 surgeries or more since this will happen mostly due to poor work.


Jeff Alterman at alterman@bestweb.net

[Julie Lauzon]

Hi. My son was born with a ucl&p and he had his palate repaired when he was 9 months old. He had no problems. He was even able to come home the day after the surgery. That night he was eating. He couldn't have his bottle for 3 weeks and we had to ditch his binki but he managed with a sippy cup and at times a syringe. He healed very nicely and had no issues with fistulas or anything else. He is going to be 21 months old next Monday and is using tons of words and starting to put phrases together. Just make sure you maintain his care and make sure he continues to see his facial cranial team. He will be fine.
Take care
Julie
MOm to Nicholas jsmiley52270@aol.com

[Anonymous]

hi julie,
my son garrett is 2yrs old and has had no problems at all with any of his surgeries. be sure you follow all directions given to you by md and he will do great. garrett started speech therapy @ 6mo old, at this age they work with muscle stimulation. the program he is in is called Early Steps, federally funded, they accept payment by insurance if you have it, but there is no out of pocket expense. thats the way it works in my area, something worth checking into. best wishes to you and your little one.
sincerely,
julie

[Julie Lauzon]

Hi. I think this response was meant for the woman who originally posted it. I too responded to her and you accidently responded to my response if that makes any sense.

[babyface]

I should have titled this not so (succesful cleft palate repair). My son has developed a fistula and I am absolutley devested Have spent most of the day crying.I feel so guilty because after what he went through he will probably have to go through it all again. Is a small one where the hard palate meets the soft palate and has grown since yesterday - what do I have to expect, more operations, wait and see, ? what please help me I am losing my mind

[Jeff Alterman]

A fistula in the palate occurs on occasion. The only thing that you can do is to try and have it closed surgically. An obturator might help, but it should only be a temporary measure.


Jeff Alterman at alterman@bestweb.net

[Jennifer M.]

I had a small fistula repaired a few years ago. I did not consider it to be a 'rough' surgery, it was more discomfort than pain. I think I was in the hospital for like a day, maybe two. Don't worry, he'll be fine.

[Jennifer M.]

... Sometimes 6 to 8 surgeries are needed in the most severe cases, but make sure that your child will not end up needing 15 to 20 surgeries or more since this will happen mostly due to poor work.


Jeff Alterman at alterman@bestweb.net

This is a false and misguided statement. Yes, there are people who have had bad experiences with surgeons however just because one has 15 to 20 surgeries does NOT mean that their surgical team does 'poor work'.

[gc0447]

Dear Brandy,

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

http://www.craniofacial.net/hypertelorism.htm (Anopthalmus with Frontonasal Dysplasia)
http://www.craniofacial.net/testimonials.htm (Georgette, Patient)
http://www.worldcf.org/support_groups.cfm (Craniofacial anomalies)
http://extratv.warnerbros.com/cmp/spotl ... 06_09a.htm
http://www.cleftadvocate.org/ff0104Georgette.html

Brandi, please email me at georgettecouvall@hotmail.com. I would like to give you the information about an upcoming Craniosynostosis Event in Texas.

Thanks. I look forward to hearing from you.

Sincerely,

Georgette Couvall