It is my understanding you need to determine what the cause of PRS was for you - was it linked to a specific sydrome (such as Sticklers), or was it due to something else? I agree you should speak with a genetics counsellor, allowing you to get a clearer picture on the chances of having a child with PRS. I can say this however, my third son was born with PRS - and there is no history of PRS, clefts, etc. on either side. While the first few months were very challenging/unexpected (he was in hospital for three months). Now at the age of 2, he is doing wonderfully and is just your typical toddler. He is in regular speech therapy (our doctors/therapists believe by the age of 4 or 5 his speech will be that of a 'typical' child his age) and cognitively he is reaching all his milestones.
I honestly wouldn't change all that we have been through for anything. Already knowing that PRS exists (as a potential Mom), you are leaps ahead of where most of us where when our children were born. I look at my little guy today and can't think of not having him around. He is a 'typical' toddler and aside from having to work on his speech - no one would be the wiser about him having PRS at birth.
: --Previous Message--
: Hi Jessica,
: Thanks for sharing your story. I really
: don't have any answers, but I would
: recommend seeing a genetics couselor. They
: might be able to give you some answers to
: help you make informed decisions.
: --Previous Message--
: Im now 20 yrs old. I was born with PRS at
: time no one really understood what it was or
: why i was born with it. I had operations to
: repair my celft and my jaw became normale
: size by the time i was 3. I have always
: wondered if i was able to have children and
: my biggest fear is having a child with PRS.
: I dont think i would be able to deal with
: how mean the kids now a days are to other
: children who dont speak right. But long
: story short i am a little nervous and
: wondering if being born with PRS does that
: effect my changes of having a child of my
: own and will it have PRS to??
: Hey Jessica. We have a little one with prs.
: She (and we) saw a genetics counselor to
: see why she ended up with prs. She has a
: 50% chance of passing it on to her
: offspring. They can definitely tell you
: your chances of passing it on. If it's in
: your genes, you have a chance. People can
: be cruel, but so far we have found with
: education and openness, most kids are very
: kind and adults just curious. If people are
: rude, they will find a reason to make fun,
: even if someone is "perfect". You
: can't stop others, but you can make it
: through, and so can any child of yours
: because of a loving family support
« 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.