Hi Kristin

i was born with prs and cleft palate in the 60's, my cleft was fixed
when i was less than a year old. I was never given a trach either
but was placed face down on a special frame that meant airways were
kept clear and the lower jaw fell forward because of the prone
position. to see me or hear me now you would never know i had a
problem.

at 14 i was told by eye doctors that i had sticklers, my joints
aren't great but i can handle that, waiting for new hips at the
moment! my eyes have always been poor but because i know/knew about
these things i have a fabulous life, my own home, good job, great
family and friends, i don't feel i've ever missed anything, i have
my own horse and ride regularly....
what i am saying is that your son has a good a chance as anyone of
having a regular life, and obviously you are a caring mum (you
wouldn't be here otherwise) - so he has a greater head start...

lots of love to you both

jane - uk
--- In sticklersyndrome@yahoogroups.com, "mommies_joy21"
<mommies_joy21@y...> wrote:
> Hi,
>
> I have a son who was born on oct. 8th and has what they call a
> pierre robin syndrome. I was wondering if anyone can share any
> experiences/wisdom on whats to come with him going thru this
> syndrome. and whens the cleft usually fixed on children born in
the
> 90's or 2000's. Because when i was born with a cleft palate it
> wasn't fixed till almost 2yrs of age was wondering if it might
have
> changed.
>
>
> Thanks,
>
> Kristin