It sounds like there might be something else going on with this poor 
little guy too. A submucosal cleft palate usually affects the bone of 
the posterior hard palate, which prevents the muscles of the soft palate 
from attaching properly. In addition, some babies have delayed fusion of 
the soft palate, resulting in an overt cleft or a bifid uvula, which 
this baby has.

The improper muscle attachments makes the soft palate work imperfectly. 
Instead of smoothly sealing the back of the tongue for sucking and the 
back of the nose (nasopharynx) for swallowing, the soft palate may take 
a bowed shape that fails to do one or both these jobs properly. Milk may 
go up the baby's nose and fall into the airway, making feeding a 
miserable experience. If the milk is not human milk, there is even 
greater risk of pneumonia from the aspiration.

It sounds like this baby has swallowing problems. Sometimes swallowing 
difficulties are related to reflux, and sometimes they are confused with 
reflux. Reflux can irritate the recurrent laryngeal nerve, and make the 
pharynx less sensitive to the need to swallow. There's research that 
treating reflux reverses this process (I forget the citation, it's in 
Supporting Sucking Skills in Breastfeeding Infants, which you can search 
through on books.google.com . )

This baby should also be checked for other midline problems. Tongue-tie 
and choanal atresia can be associated with submucosal clefts of a 
specific genetic origin, and the combination of several problems would 
better explain this infant's problems feeding.  I'm glad he's going to 
see the cleft team, that will allow him to get a good speech therapist 
to look at him.

Catherine Watson Genna BS, IBCLC  NYC  cwgenna.com


On 2/22/2011 2:45 PM, Leilani Wilde wrote:
> I have permission from the mom to post this.This is an email from a mother who has a baby that was recently diagnosed with a submucousal palate. Can anyone give advice in regards to her questions and concerns?
>
>
>
> My son, McKinley, is now 8 months old - his pediatrician is Robert Warner/La Costa Peds. He has not been seen by an occ therapist - we're just in the beginning stages of diagnosing a submucousal cleft palate. It's a long story! He also has reflux which he's currently on prevacid for. After months of really struggling to get him to eat (he never could suck very well or latch onto my breast after the engorgement period ended, and also had a very difficult time taking any bottle). he's finally go the hang of that. But now we're having difficulty with solids because he's got a super sensitive gag reflex and any sort of throat swelling (even a minor cold) puts him off solids entirely. He's also had chronic sinus infections that his ENT (Anthony Magit) believes is actually from the reflux and increased his prevacid. We don't know if he'll need surgery yet for the cleft palate - it looks to be a fairly mild case compared to the pics online, but with his high  palate and forked uvula, he'll probably need some intervention if nothing else than for speech purposes.
>
> He's gaining weight just fine, but I'd really like to move him on to real food. We see the cleft palate team at Rady's Childrens Hospital on May 2.
>
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