[tri-med] Re: cleft palate

Elanor is T18, but she was born with a cleft lip & palate.  We had her lip 
fixed when she was tiny, but haven't had the palate repaired.  Our plastic 
surgeon (who is very experienced and very fantastic!) said that it is most 
important to fix the palate when the child starts making sounds, especially 
b's, d's, m's, etc.  If the palate isn't fixed before or right when the 
child starts making those types of sounds, he/she will learn to say them 
with their cleft, then after it is repaired they have to relearn how to say 
them "normally".  Since Elanor hasn't shown any interest in learning to 
speak, we haven't worried much about it.  I have been told that eating isn't 
such a problem.  Kids learn to not get food into their nose, and if they do 
they just sneeze it out pretty effectively (heard some great stories about 
that!).  We also have decided not to get the palate fixed because Elanor has 
obstructive apnea, and usually kids with clefts don't have that problem (the 
airway is more open).  The theory is if the cleft was fixed, there would be 
more restriction, and worse apnea.  I would talk to a plastic surgeon 
experienced in cleft surgery, and also a speech pathologist to get some more 
insight.

Hope I could help!

Jennifer, mom to Arwen, 7; Elanor (t18), 5; caregiver to Joe (cerebral palsy 
& spastic displaysia), 26 & Eric (cerebral palsy & seizure disorder), 19; 
and wife to Andrew
----- Original Message ----- 
From: <alang12.1@xxxxxxxx>
To: <tri-med@xxxxxxxxxxxxx>
Sent: Monday, March 28, 2005 9:35 AM
Subject: [tri-med] cleft palate


>
> Does it make sense to fix a cleft palate? Refoel is now nine months old. 
> He does show some sucking ability. Does anyone have experience with 
> trisomy 13 and severe celft palate. He has no nose and restrticted 
> arirways, so there is little chance he will be able to get out the trach. 
> Does it make sense to make him go through all those operations to fix the 
> palate? Sincerely, Arthur
>
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