Submucous cleft

[Mom_2_Boyz]

I am just looking for any moms whose kids have had a submucous cleft.  My oldest had a complete bilateral cleft lip and palate.  So, I know something about clefts in general.  I have 2 other little boys who were not cleft affected.  Six weeks ago, I had another little boy.  There was no evidence of cleft on his ultrasound at 20 weeks.  However, from first feeding to the feeding he had 1 hour ago he has choked at every feeding.  And I am not talking about a little cough.  He has to stop eating and he turns red, sometimes even stops breathing.  It just seems really unusual to me and he actually reminds me of when I used to feed my oldest who had a complete cleft more than when I fed my not cleft affected boys.  I felt the roof of his mouth and where the soft and hard palate meet it seems there is a bony bump just to the right of center and a soft spot just to the left of center.   He swallows so much air when he eats and the choking is scary to me (and him I am sure).  He seems to have reflux and the choking and swallowing air just seems to make it worse.  I have decided to take him to the doctor about the spitting and gas (possible reflux), so I will most likely ask about the submucous cleft at that appointment.  I was just looking for other moms' experiences with this to get a better idea if that could be at work here.  Thanks in advance.  Also, please feel free to private message me if you want about this.

**EDITED to add:  I just felt the palate again with a better frame of reference.  The bony area was actually farther to the right and there is one on the left side, so that may be the normal bony ridge we all have.  I can't see his uvula to know if it is bifid or missing.  He appears to have a very high palatal arch.

[MamaOfB]

Oct. 27, 2008 at 8:28 PM

Hope you find an answer for you and K.  I'll be praying for you.  ~J