20 month old with repaired cleft palate

[Diana Banks]

My daughter had a cleft palate. She was a premie at 30 weeks gestational age at birth. She weighed 1 lb 15 oz and was in the neonate center for 4 months before she came home for the first time. She was a failure to thrive for a very long time. The drs and nurses would not allow her to eat by mouth because it drained her energy. We eventually had a mic-key button installed. Due to a congential heart defect she was unable to get her repair doen until June 2001. We see a speech therapist weekly but are not having any progress. I am looking for help from anyone who has been in my shoes. She keeps her tongue up to protect the hole in the roof of her mouth that is no longer there. She will not swallow. Please assist me in anyway you can.


Thank you

[dwkjfryman@msn.com]

I wish I could help. I can only tell you the things you have probably done. Get in touch with as many people out there as you can, surgeons, socialworkers, support groups. I don't have any advice but I can pray everyday for you and your daughter. I am a very good listener if you need anyone to talk to just to get the frustration out please let me know. Your friend Kelly

[Jennifer Wimsatt]

I have read something similar to this either in posts from the online support group for WideSmiles or in the actual website. If you'd like to email me privately then I might be able to point you in the right direction. If not I know someone who can. Privtangel@aol.com
thanks

[kvanormer@aol.com]

Diana, This is my first vivit to the site. I read your frustration and it reminds me of how I have felt. My son now 11 mo old has a Cleft palate & a syndrome. The Geneticists are still trying to figure out what. Beals Syndrome has heart problems associated with them as well as connective tissue problems. If you would like to write me we can discuss more. I have done alot of research on syndromes related to Clefts. There is Pierre Robin, Stickler Syndrome. My son has contractures and connective tissue disorders. Look forward to hearing from you. Take Care,Katie