We did have to play the waiting game since he wasn't diagnosed with PRS until 2 weeks after birth. It was a very scary and emotional time for us, mainly because we didn't know what was going on. You have an advantage in that you can prepare for this and get as much information on these conditions as you can so you are not caught off guard. Although the stuff on the internet may sound hopeless and be very overwhelming, you will find on here that many of the children are doing great. It is amazing what doctors can do these days and a lot of these kids lead very normal lives, even the ones who have syndromes associated with the recessed jaw and cleft palate. I wish I would have found this website a lot earlier, because it would have helped to read about other's experiences and know that they went through the same thing and everything turned out fine for them in the end. The people on this board are very supportive and will help you with any questions or concerns you have.
If you ever need anything, please let me know and I'd be happy to send you my # or email address. Good luck and please keep us updated!
: Our doctor said it could be one of 60
: different syndromes or just PRS which is
: what we are all hoping for. Did you have to
: do the waiting game? Were they afraid the
: jaw could indicate something else? They are
: just double checking for chromosomal
: abnormalities now even though my scan was 1
: in 10,000 for 13, 18 and 21. We are so
: scared and feel like there is no hope. How
: do we get through this? Were you scared?
: --Previous Message--
: Yes, our doctor is even able to detect PRS
: 12 weeks. It was very visible on the
: ultrasounds. My son had a moderate to severe
: recessed jaw. He had a jaw distraction done
: at 4 weeks old and you'd never know it. He
: looks like every other kid his age and it
: completely fixed the PRS.
: --Previous Message--
: My husband and I are expecting our first
: child in June. At my 13 week ultrasound to
: check for Downs Syndrome the doctor said the
: baby's chin was severely recessed and small.
: They sent us for a level II ultrasound which
: showed the same thing. The perinatalogist
: said that it could be one of 80 different
: syndromes and makes it seem like we should
: terminate. The genetic counselor on the
: other hand thinks it is PRS and just
: physical. W go for a CVS tomorrow. Did
: anyone with children with PRS see a recessed
: chin on ultrasound this early?
« Back to index
If you would like to join our email group, please check out our home page at www.pierrerobin.org and follow the instructions there. We would love to have you.