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This one is about: Submucous Cleft Questions
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Hello...My 18 month old nephew has been diagnosed w/ a sub-mucous cleft palate and I would like to provide some help to my sister and brother-in-law on this. I checked your website and found it very informative but had a couple of questions.
1. The doctors have recommended plastic surgery...should this permanently correct the problem?
Plastic surgery is, of course, permanent. However, will the current surgery be "good for life" - most likely, but no guarantee. The reasons are several, but two big ones - - first, because of a potential for fistula. Fistulas occur when surgically repaired tissues reopen. They are not uncommon with palate repair, but because the submucous cleft has a LOT of palatal tissue to work with, it is LESS likely to occur. The second is growth. Your nephew will do a lot of growing, and scar tissues do not grow at the same rate as normal tissue. This is often not a problem, but on occasion, the palate simply refuses to grow with the child, and the result is then a short palate. The solution is, again, another surgery to lengthen the palate.
This is not necessarily what will happen in every case of submucous cleft.
2. What questions would you recommend they ask the potential surgeon to make sure that the diagnosis is correct and that the surgery will correct the problem?
Response: Ask them if they may want to try speech therapy first. Many times a submucous cleft can be handled without surgery at all. Ask them how many submucous clefts they handle in their office. Be sure you know what sorts of eating restrictions your nephew will be facing after the surgery, and for how long. Ask if parents will be allowed to go into recovery to calm the baby after the surgery. Find out how long the hospital stay will be expected so they can prepare accordingly. Learn the type of antibiotic, and the type of pain reliever the baby will be using. Get any prescriptions filled before hand so they can devote whatever time they can to the baby's healing.
3. They are concerned that the doctors should have known this earlier than now and that there could have been something they could have done to prevent this...Your thoughts??
Response: Most submucous clefts are actually not discovered until the child is around 4 and speech difficulties alert the doctors to look for it. Usually the only early signs are a bifid (split) uvula (the punching bag in the throat) and sucking difficulty. However, the uvula is often missed and the sucking problems, if present, can be attributed to so many other things. After all, remember - the palate LOOKS just fine. Nothing could have been done to prevent this. It formed at about 9 weeks of gestation. I did not happen after he was born.
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