Posted by amy
![]()
on 1/11/2011, 10:19 pm, in reply to "More than one baby with Pierre Robin"
173.71.87.36
I will tell you - 16 years ago I had a daughter with PRS. 20 mos later we had a perfect baby boy. It was not until 2 years ago that we found out I was the genetic factor in all of this - I held the mutation as well as passed it to our daughter. I urge you to have the genetic testing...if your doctor is not aware, we had our testing done at Childrens Hospital of Philadelphia. I'm sure if they were contacted they would be able to instruct you further. It's an AMAZING facility.
--Previous Message--
: Hi,
:
: I was just wondering whether any of you have
: given birth to more than one child with
: Pierre Robin Sequence. In March this year I
: had a termination for medical reasons at 18
: wks because our son had an extreme case of
: micrognathia. The autopsy showed Pierre
: Robin Sequence but no other abnormalities
: and the geneticist doesn't suspect a further
: syndrome. I'm now 10 wks pregnant and am
: worrying about it happening again. What are
: the chances of this? We live in the UK and
: info about this condition is very scant.
: Could I have caused this?
:
Message Thread
![]()
« 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.