[ Post a Response | 22q Deletion Interest Board ]
Posted by Rebecca on 4/20/2006, 9:18 am
71.3.190.1
We just adopted a baby from Korea. Just before leaving we found out she's deaf.. She has cleft palate, vsd & pda. We have been told she will never hear or speak which does not really bother us. Just frustrated with the way doctors act. I'm looking for information on older children or what's expected. They are fairly certain she is 22q. we are awaiting all the testing to come back. Her malformation in her ear is rare and is associated to this spectrum of genetic deletions. She's happy but has been very sick. She has major feeding issues. I would love to hear from anyone with an older child living with 22q deletion. Our daughter is 16 mos. old. and been through many surgeries. The mental/psychological issues are concerning. We have read alot. But not on life expectancy/older child development. Thanks Rebecca-Florida
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