Cleft Lip & Palate

[deleted account] ( 10 moms have responded )

Hi! My son Tyler was born March 25, 2008 with a complete unilateral cleft lip and a bilateral cleft palate. He had his first surgery in June to repair his lip and he is scheduled for palate surgery in January.

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Marie - posted on 11/01/2008

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The problem is that he also has reflux and that might explain the choking. Of course, my last one had reflux and he didn't choke in the first few swallows ever. And that is par for the course with my new little one. Who knows. I guess it is a non-issue unless the choking becomes excessive to the point of aspirating or other health issues or until he starts speaking and has issues. Also, I think some times I become unnecessariky worried. All my other kids have health issues and I am a nurse. Put the two together and you have Hypochondriac Mom! LOL!

Emily - posted on 10/31/2008

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Oy... that's rough - Ari ate very frequently at the beginning but now he can go for 3 hours which makes life easier. Our pediatrician (who's also a friend) says that sub-mucosal clefts are very hard to diagnose - she didn't see it, only the surgeon did and he used two tongue depressors to get a good look.

Marie - posted on 10/30/2008

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Oh, and you're welcome! I couldn't believe no one had started one yet, but we really need it! :)

Marie - posted on 10/30/2008

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Kael is a noisy eater, so I am not sure I would hear a click even if he made it. Feeding in general is just a chore with him. He eats every 1 1/2 - 2 hours. He chokes, though that is decreasing in frequency. I have tried to look at his uvual, but he has a high, narrow palatal arch and it makes it really hard to see in there. Today, I thought I saw it and it looked extremely small, almost non-existant. I just wish I could get a good look to know for sure. Today, he was screaming and there was a lot of spit and mucus making it hard to see. Oh, the other thing I noticed is that he seems to have a fairly strong suck and he gets milk, but it just feels weaker in a lot of ways. I feel a lot of the pressure in the front, not all over like I did with my two not cleft affected boys. Thanks for your story. It is nice to hear from real moms instead of just medical websites .

Emily - posted on 10/30/2008

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Hi Marie;
So, they suspect a sub mucosal cleft because his uvula is split and because he's a slow feeder. They also mentioned that often there is a clicking noise that accompanies kids with sub-mucosal clefts when they suck but he doesn't have that. Ari did some choking when he was really little but that stopped when he was maybe 2 months old (it's a bit of a blur)! According to the surgeon, they don't operate on sub-mucosal clefts until 14mos and only if there's a problem with language development.
So... we wait and see! Good luck.

Marie - posted on 10/30/2008

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Hi, Emily! Welcome! You are just the person I have been looking for! I just had a baby about 6 weeks ago (Kael) and I sort of suspect a submucosal cleft palate. I just don't know exactly how I would tell at this age. What are the symptoms/ signs that made them think Ari has one? Kael chokes at almost every feeding. He also breastfeeds and while he has a good latch, it feels different than my two not cleft affect boys. My older son, Drew had a bliteral cleft lip and palate with almost no palate to speak of, so he nearly suffocated when I tried to breastfeed. I know he choked every feeding... I just don't know if I am jaded having had a cleft child already or if my concerns are warrented...

Emily - posted on 10/29/2008

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Hi!
My son Ari was born in July with a partial bi-lateral cleft lip. They suspect that he may have a sub-mucosal cleft as well but they won't know whether that requires surgery until he's older. My husband had a complete bilateral cleft lip and palate when he was born (1974) so we weren't altogether surprised. Ari is able to breastfeed which is wonderful! His surgery is scheduled for the end of November and I'm trying not to be too anxious about it!

Marie - posted on 10/28/2008

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Welcome! My son Drew was born March 25 too, but in 2001. Drew has a complete bilateral cleft lip and palate as part of Velo-cardio-facial Syndrome. He is mostly repaired now with no openings anymore as of January when he had a bilateral bone graft to his jaw. Now, we just have nose repairs, jaw repositioning, and maybe a p-flap to help with speech. Again, welcome! Good to have you!

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