sub-mucous cleft

[Rosemary]

my son is three months old and was diagnosed with a sub-mucous cleft at 10 days old. Initially he fed well using mead jhonson squeezy bottles with nuk teat. however at 6 weeks old he contracted bronchiolitis and was admitted to hospital for a week where a nasal gastric tube was inserted (as they do for lots of babies, irrespective of any prior feeding difficulties). when we were discharged the tube stayed in for 5 days until my son's feeding was back on track. however, his feeding started to deteriorate and he seemed unable to take the bottle - he would take a few sucks and then start screaming. the tube was therefore reinserted. our speech therapist did a swallow study which had been initially not deemed necessary as the first speech therapist we saw said that our son swallowed well. apparently the swallow study showed 'pooling' of milk in the mouth which can be a risk for aspiration. we were therefore advised no oral feedings and now we are being told our son must have a gastrostomy.


has anyone had a similar experience? i don't understand how my son's swallowing and feeding can have deteriorated so dramatically from being totally bottle fed to totally tube fed. and now I'm worried that the palate repair surgery which is due to take place when my son is 6 months old will not solve the problems.


has anyone experience of a sub-mucous palate being repaired and did things improve following surgery?


I would love to hear from anyone who has any experience of sub-mucous clefts at all, as I have so little information on this subject.

[Lori - lormar3@aol.com]

My daughter is 5 years old and has a submucous cleft. I would love to talk to you. My email address is lormar3@aol.com

[allison]

Hello Rosemary,


I am going through a similar problem, not as harsh as yours.
My son is 6 months and was just diagnosed with a sub mucous cleft pallet. I have been to 4 doctors and they each have a differnt opinion. I am going to a Childrens hospital on March 30th to get their opinion. I also have an appointment for my son to see a plastic surgen this Friday. Nobody really wants to handle this case. I have 2 other children and am very stressed out. There is not much information on this problem anywhere. What kind of dr. are you seeing.


My son also has a feeding problem. He will take formula (nutramigen) but no solid food. He can never take a full bottle at once, he breaks after every few sips. My son uses the Playtex nursers and can take them no problem. He also uses the Nam pacifiers with no problem. I just had him tested for Allergies and he came back negative for any food allergies. I am trying to make him an appointment for The feeding center at St. Joes hospital. I am still waiting for a phone call back. My email is allison1223@msn.com if you want to email me direct.


Good luck


allison

[emily]

My name is emily and i am 16 years old.. that is what i have i have gotten two surguries on this and it is nothing too dangerous.. my email is xdancincutie13x@aol.com
PLEASe feel free to email me.. i have plenty of advice