Posted by Holly on 1/10/2008, 7:09 pm, in reply to "Re: Pierre Robin Sequence"
99.224.98.179
When my son Brayden was born we were surprised to hear that he had PRS. His ultrasounds were normal and he scored 9/9 on his Apgar (test after birth). It wasn't until about an hour after his birth that his cleft palate was noticed. Our genitics dr. told us not to worry about Sticklers because it was not in our family. However at a routine eye exam at 5 months we were again recommended back to genetics because of Brayden's poor vision. He was tested for sticklers and tested positive. The drs then checked both my husband and I. We both do not have sticklers. Our genetics dr told us that basically Brayden's sticklers was a "fluke" and that he will have a 50% chance of passing it on to his children. Because my husband and I tested negative our older son does not have it and if we have another child then our chances of having a PRS baby is the same as any other non carrier (about 4%). The good thing is that by the time Brayden (who is 2) wants to have kids perhaps science will have progressed far enough to fix his DNA - who knows?? The other thing that came up on Brayden's genetics test was that he carries an extra amino acid on his DNA strand (something that the lab that tested him had never seen before). So basically we're in a wait and see how he does situation. As of now - he is a perfectly,healthy,normal 2 year old that does his best to keep up with his 4 year old brother - I couldn't ask for more!!!
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