Elana,

Hi, all the genetic counselors i have been seen and talked to about the cleft's
say that it is not 100% genetic. But even though genetics play a part in it that
it could be caused by enviromental stuff. Like I have 2 kids a girl and a boy.
My girl whose now 2yrs old was born fine with no cleft palate or anything wrong
with her at all. Now on the other hand my little boy whose now 2months old has
cleft palate, small jaw, hypospadia and hydrocephalus. The docs told me that the
cleft palate is made by the way the baby is positioned while being carried. That
the head is positioned downward and while the mouth portion is still forming the
tongue goes up into the area where the cleft should be and then the skin can't
form the palate b/c of the tongue being there. Hope that is clear enough to
understand its hard to translate doctor language into normal language lol!

But ya dont be afraid to have kids my mom did the same thing b/c she had me and
I had pneumonia 2x and clapsed lung and cleft palate. And she was so afraid to
have any more kids so I am now an only child lol. But me I knew the risk of
having kids that I could possibly have a kid with a cleft palate so I ate a lot
of folic acid like spinach and took folic acid pills along with pre natal
vitamins. Thats why sometimes I feel really bad for my son b/c while i was
pregnant with him we were hard for money and all I could do was take my
prenatals. Andrew kinda sprung up on us so I believe thats why it was harder for
us but everyone says not to let it get me down about all his problems.

Well hope all this help and yes I would definetly seek a 2nd opinion, its really
not right for a doctor to try to play god and tell you what they know will
happen b/c they dont know what happens and no matter how many years of school
they go to be a doctor it doesn't give them the right.

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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