Soft Cleft Palate need help before surgery

[craig@ccrtc.com]

I have a 3 month old who has a soft cleft palate and the Perrier Robien S--no trach, breathing tubes or feeding tubes required after birth.Eats fine, but breastmilk does comeback out her nose often.She is on the apnea monitor.She seems like any other little baby, hears fine(so far no ear infections).Is there any benefit in getting the soft palate repaired immediately or should we wait until she has grown more?Doctors are saying around 10 months.We do not want her to go thru several surgeries, so we want to know if we wait till her throat developes more then there would be less chances of repeat surgery.The back of her throat looks like a horeshoe shape, appears to be same size as at birth(not bigger slightly smaller)


Any comments or help is appreciated!


Thanks,
Marcia
craig@ccrtc.com

[Andrea]

Hi, my daughter was born with PRS as well, she is now 3 years old. She however, had a trach for the first 16 months. Marissa had her surgery at 11 months. From what we were told they usually do surgeries on children with PRS a little later than kids without the small airway, to allow for growth. Sometimes if the child has a trach they many do it earlier because they don't have to worry about the swelling interfering with their breathing. This was just our experience, feel free to e-mail me. andrea_showalter@yahoo.com

[Anonymous]

Dear Marcia,
My child also has PRS and had his cleft repaired at 3 months by Dr. Rosenblum in Norfolk, Va. We traveled a long way to get there but it was worth it. He works with Dr. Magee and operation smile. They are the only group in the country that repair palates early even though they waited until 3 months for the jaw to get bigger. Our doctor wanted to wait until 12-18 months. I'm glad we did it! My son is doing great! You should call them and talk to them on the phone at least. Their # 757 627 6700. Good Luck!

[ssaru2003@hotmail.com]

Dear Sir/ Madam,
I’m Surendra Saru from Nepalgunj, Nepal.
I was checking website for Cleft Lip and Palate patient’s help, who are very poor and not able to pay their surgery cost. I fund you website so I pray to you for help us. As know Nepal is very poor country in the word. We have more then 30 patients are waiting for surgery but there isn’t fund to help for the poor patients so please support to poor patients who need your help. If need more information or details of the our programme, please let me know. Thank very much.


I’m looking forward to hearing you.


Yours Sincerely,
Surendra Saru,
Surgical camp manager


C/O
INF
Banke Programme
PO. Box: 1230
Kathmandu, Nepal
Tel: 00977 81 524059, 522030
Email: <ssaru2003@hotmail.com>