SUBMUCOUS CLEFT PALATE-DESPERATE!!!!

[STOOGEFANS@AOL.COM]

WE ARE DESPERATE FOR ANSWERS. MY SON IS 4 1/2,READY FOR KINDERGARDEN & RECENTLY DIAGNOSED WITH SUBMUCOUS CLEFT PALATE. LOOKING FOR SURGERY OPTIONS. WE ARE SKEPTICAL ON THE OPTIONS GIVEN TO US BY ENT DR THAT WAS PART OF CRANIOFACIAL TEAM. ANY GOOD DR'S IN OHIO? SON HAS G-TUBE,FEEDING PROBLEMS,NASAL EMISSION WHEN TALKING...APPRECIATE ANY INFO THAT CAN BE SHARED!

[Savanna's mom]

Hi. I'm not sure what the submucous actually means. My daughter was born with a soft cleft palate which she had repaired February 28th. She, too, had feeding difficulties and used a g-tube for several months. Our ENT was Dr. Jay Werkhaven at Vanderbilt Medical Center, but a plastic surgeon, Dr. Kevin Kelly, was the one who repaired the cleft (we live in Tennessee). Savanna has Pierre' Robin Syndrome which is when the bottom jaw does not advance forward enough. Her tongue blocked her airway and she had a tracheostomy for about 8 months. This is what caused her cleft palate. She is doing wonderfully now. She will be celebrating her first birthday on Easter Sunday. She had to spend 5 days in the hospital for the repair surgery and things went very smoothly. It took 3 hours and she recovered well. I would be more than happy to talk with you more. Our email is gopredators@excite.com.
God bless you all.


Melanie

[Kzak]

My Son Was born with submucous cleft. Had Surgery at 2, is now 10. The surgery was a complete success for him. Also had Pharengeal flap, and palateal lengthening. This is frightening for any parent, but you have to keep it together for your child. first you have to decide whether the quality of life with or without the surgery warrants invasive action. (My son was not understandable by anyone except his sister) Which ever you decide, he will need continued medical intervention and re-evaluation as he grows. Steven has now had several interventions of various types.

[Phillipa mother of Alex n]

I wonder what surgery has been suggested to you. Alex was five years old when finally diagnosed with an occult sub-mucous cleft palate. He has had two pharyngioplasties (spelling?) performed by plastic surgeon Mr Mercer at the Frenchay Hospital in Bristol UK. The first one was not very successful - it is a bit like sawing bits off the legs of a table to get them even. The second one was far more successful and Alex's speech is now within normal ranges though still a little hypernasal.


It is well worth getting a referral to a surgeon that you trust and who has wide experience of facial plastic surgery.
I wish you luck and hope things turn out well for you.


Phillipa

[greeneyez_77@hotmail.com-]

Hello, my daughter is due to have surgery for her submucousal cleft on Wednesday the 28th of April. Her Dr. has chosen Z-Plasty for her treatment. You can check into that.If you have any questions you can email me.
Michelle

[Pattie Bross]

Need to know more about pharangeal flap surgery. My daughter 13 may have to have it. I hear there is a great risk of sleep apnes. Has your child experienced this?


Thank you.