Bev,
Hi! My name is Heather & I live in the US. I also have SS & have had 3
girls. I also have had numerous retinal detachments. Two out of 3 of my
daughters have SS. My oldest only has vision in her left eye due to retinal
detachments. She is 12. My pregnancies however didn't pose any difficulties
for me. We didn't know I had SS until about 4 years ago after my oldest 2 girls
were born with cleft palates & my middle daughter also had pierre-robin
syndrome. You are correct there is a 50/50 chance of passing it on. My
youngest is the only one who doesn't have it. Like I said the pregnancy wasn't
a problem, but there were many issues after the births with my daughters. They
are still going on. Hope that helps you.


verity_1969 <Barichmond@...> wrote:
Hi Amy

Did you discover any further info about PGD?

To be honest at the moment we seem to be favouring adoption.

When I started to look into having a child of my own I initially had
concerns only about the baby's health and whether I would pass down
SS but I think further issues include the likelihood of retinal
detachments during pregnancy - I only have vision in my right eye,
which I value greatly. This is why I was keen to know about 'real'
experiences of other people. I have spoken to experts but I still
don't feel that I'm getting the full picture.

Bev

--- In sticklersyndrome@yahoogroups.com, Amy <amwshamws@...> wrote:
>
> Hi Bev. My names is Amy and I am currently looking into the
possibilities of having IVF and PGD so that I can have a child
without SS.
> I have discovered that it is available in the UK but at a cost. I
am currently debating the finances and emotional side of it all but
have not come to any conclusions as yet. I am only 24 at the moment
so I have some time.
> I saw a programme on the other day regarding PGD though (A Child
Against All Odds), it was very interesting, it showed the medical
side of it as well as emotional, so you saw it through step by step!
>
> Let me know how you get on though.
>
> Love
>
> Amy :o)
>
> ----- Original Message ----
> From: verity_1969 <Barichmond@...>
> To: sticklersyndrome@yahoogroups.com
> Sent: Sunday, 21 January, 2007 11:14:11 AM
> Subject: [Stickler Syndrome ] Pregnancy - your experiences welcome
>
>
>
>
>
>
>
>
>
>
>
>
>
> Hi
>
>
>
> I am interested in hearing people's experiences re child birth.
>
>
>
> I am considering having children but have drawn the following
>
> conclusions: there is a 50:50 chance of passing stickler on to my
>
> children; that pre natal testing to ascertain whether a baby would
>
> be born with stickler is not going to happen due to lack of
>
> resources in the UK/complex nature of finding the faulty gene
(which
>
> has a knock on effect re IVF; that a c section would have to be te
>
> only option due to strain on the retina during child birth. I have
>
> also recently wondered whether the carrying of a child during
>
> pregnancy can cause retinal problems too due to the weight and
>
> strain ( I read about one woman who seems to have expereineced
this
>
> but don't know if it's a common problem).
>
>
>
> Has anyone any thoughts on this or can tell me of their own
>
> experiences (positive or negative) as I am trying to build a
>
> complete picture before making a choice as I have also thought
very
>
> much about adoption.
>
>
>
> A bit of my background info:
>
> I am 37, was diagnosed with stickler at 17 (seem to be the only
one
>
> in my family, but who knows?)and have had several ops on my
retinas-
>
> both eyes- with the loss of all sight to one eye when aged 23, and
>
> have a cataract on right eye but vision generally ok but myopic.
>
> More recently I am having hearing problems in left ear.
>
>
>
> Would like to hear from anyone in similar situation
>
>
>
> Bev
>
> Yorkshire, UK
>
>
>
>
>
>
>
>
>
>
>
>
>
>
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