Submucous cleft palate

Roxanne - posted on 03/05/2009 ( 4 moms have responded )

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My daughter was recently diagnosed with a submucous cleft palate...does anyone have any experience with this? I'd really like to know what to expect. She was 3 mos. premature plus a diagnosis of Prader-Willi Syndrome. Relies on oxygen 24/7 and feeds through a g-tube...

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Erin - posted on 03/31/2012

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I didn't have a submucos cleft palate, but i had a pharangeal deficiency when I was a child. I also have 22q11 deletion syndrome. I had surgery when I was 4.5 and I was fine. I know it's not the same as what your daughter has, but it is similar. My surgery worked really well. No one can ever tell that I had a speech problem.

Michele - posted on 03/29/2012

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My son, who is 14 months old was recently diagnosed with a submucous cleft palate. I am shocked and disappointed it wasn't discovered sooner. He spent 6 weeks in the NICU with eating issues. None of the NICU doc's even explored the possibility of a cleft palate. They blamed it on reflux. Recently I took him to ENT because we have been having a lot of issue's with introducing solids. Aidan gags and vomits with any food that has a different texture than puree. It was the ENT doc that spotted the cleft palate. We were than sent to the cleft cranial clinic. He definitely has a submucous cleft palate. They said surgery will only be necessary if he has speech issues as he gets older. They also suggested genetic testing to see if he has a 'syndrome'. When I asked what type of syndrome, they said it could be 200 different ones. I find it interesting that you both mentioned syndromes.

Has anyone else had feeding difficulties with their children that have a submucous cleft palate? I feel at my ropes end. We have tried all types of textures, but nothing seems to work. Any suggestions??

Roxanne - posted on 03/11/2009

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Quoting Rebecca:

Hi! My daughter was diagnosed on Monday with a submucous palate. We meet with the full craniofacial team at the University of Wisconsin's Children's Hospital soon. Most like Adlai will not need surgery until she is older because she no longer regurges through her nose and does not get ear infections. We will see how her speech progresses before we decide on a surgery date. The surgery sounds fairly simple. My daughter will be 2 next month and has 22q11.2 deletion syndrome.


One question I will be asking at her next appointment is..."why wasn't she diasgnosed sooner?"  Traditional cleft palates and lips just don't appear overnight, so why did it take so long for a diagnosis.  Every well child visit the peditrician looks in your childs mouth, why wouldn't it be discovered then, or even at birth.  Gracie's ENT doctor has not mentioned a criofacial team for a cleft palate team as of yet.  We go back in 4 wks to see if the fluid had corrected itself and if not then she will need tubes.  Another surgery to be nervous about!  22q11.2 deletion syndrome, another syndrome I've never heard of.  Prior to Gracies arrival the only syndrome I'd heard of is Down's Syndrome...but now my daughter has Prader-Willi and your daughters 22q11.2 deletion syndrome.  In a brief reading about it some of the characteristics seems similar between the two.  When you first heard the diagnosis did you think the worst?  I did and just sort of froze and didn't think of any questions until I had time to think about it on my way home from the appt. 



Well thank you for responding and please keep me updated with you decisions about surgery.  It will be nice to have someone to talk with about what to expect.  I wish you and your family the best and good luck with Adlai. 

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Hi! My daughter was diagnosed on Monday with a submucous palate. We meet with the full craniofacial team at the University of Wisconsin's Children's Hospital soon. Most like Adlai will not need surgery until she is older because she no longer regurges through her nose and does not get ear infections. We will see how her speech progresses before we decide on a surgery date. The surgery sounds fairly simple. My daughter will be 2 next month and has 22q11.2 deletion syndrome.

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