Re: Adult w/ RSS - How will MY RSS affect my pregnancy?

[Guest guest]

Hi allison, my name is kim and i'm an rss adult, i dont know if you are aware

but there is actually a listserve for rss adults. ansd there are a couple os rss

women who have children. Please vemail me privately and i'll give you the

moderators email address if you want to join us and chat

alliee_82 wrote: Hi,

I'm a 23-year-old who was diagnosed with RSS as a young child. My

husband and I are talking about starting a family, and I want to know

what the chances are of our children having RSS, and also if my

pregnancy might be different because of my RSS. If there are any

adults who have RSS and could contribute, I'd appreciate it!

Thanks ~

[Guest guest]

RSS adults do NOT have a greater chance of having RSS kids.

According to the doctors who have presented at the Convention, RSS is

ABSOLUTELY not a hereditary syndrome. It is a congenital syndrome,

meaning it is post-conception anomoly! There is NOT a 50% chance of

getting RSS. Even the UPD 7 chromosome issue (uniparental disomoy)

is only present in 10-12% of cases...

The only thing I have heard is that RSS women may have uterine issues

that may lead to a slightly higher chance of miscarriage.

But, please let me know if anyone has heard otherwise, or knows of

newer research. This really is one of the hot questions we get when

new parents join MAGIC...(And, I think I mentioned that at this

summer's Convention, we have a hot-off-the-press research finding on

genetic differences in RSS kids--presented by Dr. Netchine from

Paris!!).

Katy

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[Guest guest]

Hi there ,

Great to " meet " you here and welcome to the family. I'm Leah and

although I don't have RSS I'm only 4'9 " and quite slender (91 lbs).

My birth mother was also 4'9 " and by fluke both my mother in law and

sister in law are 4'9 " . All of our prospective husbands are almost

6' tall with the exception of my husband who is around 5'6 " .

We all had normal vaginal births with average sized babies the

difference being that I had an extra ultrasound and a few extra

internal exams near the end to ensure that the baby would fit. I

did have a c-section with my youngest daughter, Olivia (RSS), but

that was due to her severe IUGR and prematurity.

Good OB care is a must for all pregnancies so just be sure you

like and trust your Dr and things will go well for you.

Maybe you could check out a few Achondroplasia web sites to see

what they have to say? Achon people are quite a bit shorter than

most RSS people so they should have some great info for you.

Take care!

Leah, mom to , almost 11 and

Olivia 6yrs, 23lbs, 35 " , RSS, OI

> >

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[Guest guest]

Hi ,

My daughter, , does not have RSS, but only stands 4' 10 " tall, and was

only 93# when she got pregnant with her daughter, Aidan. Her OB did change

her over to a " high risk " specialist because of her size, they were worried

she would not have enough vertical room, and they were very vigilant during

her last 6 weeks of pregnancy.

Thank goodness their worries never came to fruition, and Aidan was born full

term, strong and healthy, at 6# 5oz, and 18 " long.

Pat (g-ma to , RSS, 4yrs 1m old, 28# 10oz, 35 " , G-tube, GHT)

PS - It was my understanding that women with RSS have no higher risk than

the general population of giving birth to a child with RSS.