hi,

When I had my daughter I seen a genetic counselor and she told me that cleft
palate isn't really all the genetic. That yes genetic does play a part but a
very small part. Its mostly environmental and stuff like that. When I had my
daughter she was a healthy baby girl weighing in 7lb. 14oz. Then on my second
child he developed PRS w/ a cleft palate but the docs said it was because he had
hydrocephalus when I was 28wks gest. he had the head size of a 34wk old baby in
gest. And he was also breeched 90% of the time. But even then having him is just
a joy to have and its not a terrible thing just takes a little more energy to
feed him thru the special nipple. So get a second opinion b/c having a baby with
a cleft palate isn't 100% genetic my daughter is living proof of that =)! So
good luck with trying to have a baby or searching for a good doctor!

Kristin

loni2414 <loni1949@...> wrote:
Kristin,

Thank you for your emai, I have a question for you I was recently
advised agaisnt having kids because my current doctor feels that the
cleft is 100% gentics, this is causing me to find a new doctor.

Elana

--- In sticklersyndrome@yahoogroups.com, kristin
<sunshine_girl1802@y...> wrote:
> hi, I have the same problem. I am 21yrs old and a stay at home mom
of two. Well I was born with a cleft palate and I had surgery at the
age of 1. And also my speech is not on cue either until people have
been around long enough to adjust to it. Its mainly my s's, c's, and
z's the usual i think lol. I got ragged on that ALOT in school very
hard going thru school with kids. Now my 2month old when he was born
he has Hydrocephalus and Pierre Robin syndrome. Which is a small jaw
and a cleft palate and the tongue falls back into the throat. He's
had about 3 or so shunt surgeries and just today he got his trachea
put in b/c he kept going blue over the weekend b/c its wearing him
down on the tongue falling back.
>
> Even though some people may say that they dont want people to feel
sorry for there kids that have problems. But I do feel bad for my son
(2mo old) because I know that he's going to have a really hard time
thru life especially since they said that his vision is gonna be so
messed up that he wont see out of the right parts of his eyes. But
its mostly I feel bad because I know how I felt going thru speech
problems and I would like to sheild him from that because I know the
trauma it can deal to a kid and how others can be really mean about
people who are different.
>
> Kristin
>
> loni2414 <loni1949@h...> wrote:
> I thought this may be a good and safe place to vent. I'm 23 I was
> born with a cleft I had the surgery at age 3, my speech I'll be
blunt
> less then par till ones ear adjusts, I've had speech therapy my
whole
> life my doctors say its as good as it'll get.
> I'm a college grad and with my speech and the job market right now,
> my job hunt is going down and down. I keep getting asked do you
have
> a cold. Is a cold making it worse? This is after I explain it,
any
> support or advice would be great!
>
> Thanks,
> Elana
> loni1949@h...
>
>
>
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