Posted by Rob on 1/21/2008, 1:45 pm, in reply to "PRS in more than one child?"
69.201.205.41
Hi. My wife and I have 2 babies with PRS. After our first (daughter), we saw 2 separate geneticists and they both ruled out genetics. She had no other syndrome like sticklers or anything, and nobody in either of our families have PRS (or even an isolated cleft for that matter). Then we got pregnant again and we were worried about this happening again so we got a 3D ultrasound done and the Dr. said everything was normal. The jaw was not recessed she said. So 2 separate geneticists and the ultrasound doctor said it wouldn't happen again. But it did. On 9-10-07, my son was born with PRS. He also has no other syndrome and his was much less severe, as he went home after the normal 3 days (my daughter spent 6 weeks in the NICU at Albany Medical Center and had a mandibular distraction at 2 weeks old because of respiratory problems). Anyway, we have now had a permanent birth control porcedure done so that we will have no more children. We are also part of a study being done by the NY State health dept. I don't believe that doctors know as much about genetics as they think they do. If you have questions for me my email is rmac200@yahoo.com
--Previous Message--
: My daughter who is now almost 11 months old
: was born with PRS and they are considering
: it isolated so far. We've got her eyes
: checked at 5 months and everything appears
: normal so far. The geneticist told me that
: it may be caused by her position in my womb.
: I am soo scared to have another baby. The
: emotional and physical stress makes me just
: want to call it quits. I love her soo much
: and seeing her grow and develop makes me
: want another so bad, but I don't know if I
: could handle bringing another baby in this
: world and take the chance of it having to
: suffer. My daughter's case hasn't been that
: bad. She didn't need a trach or tube, just a
: palate repair and tubes at 10 months.
:
: The hardest part is the constant fear in the
: back of our minds about possible genetic. I
: want to know the truth... NO SUGAR COATING!
: Has anyone else been told its isolated, but
: have had repeated children with PRS? Does
: anyone else no of any causes (besides
: genetic)that can cause this! Thanks so much!
:
Message Thread:
« Back to thread