DownSyn Forum

Kasey · Posted: March 14 2011, 10:14 PM Post subject: Hmmmmm...

I really liked this line in the article..

"They agree that what prospective parents need is not just the option of safer and easier prenatal testing, but clear and unbiased information from their doctor about the realities of life with Down syndrome."

http://www.ctv.ca/CTVNews/TopStories/20110311/down-syndrome-testing-110312/

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Kasey, mom to Paige (4), Leigha (0!)

Momtoseven · Posted: March 15 2011, 9:29 AM Post subject:

And this line -

"I just wish people weren't as scared of Down syndrome as they are."

It is interesting how some people in the medical community are almost rooting for parents to terminate. Although my pre-natal experience was better than some I remember no support from the doctor - he simply said after the nuchal fold test "your baby has a 90% chance of having ds" and then he quickly exited the room as soon as I started to cry. Even the genetic couselor could not give me even one source for help - just a few books - one was a book called "choosing naia" - and focused a great on the decision of whether or not to abort - a "countdown" of sorts to the last day they could legally abort and then moved on from there. People are scared of ds because they hear that 90% of parents who find out their unborn baby has ds abort that child. I remember being scared - if I knew then what I know now I would have felt completely different and having other families with children who have ds to talk to instead of a doctor's cold shoulder or biased opinion would have helped tremendously.

Thanks for sharing this article.

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Maureen - Mom to Daniel(24), Brandon(22), Jordan(16), Thomas(14), Carrie(10), Samuel(7) and Mark (4)
https://www.carepages.com/carepages/MarkEdwardC32708

Kasey · Posted: March 15 2011, 11:37 AM Post subject:

I like the idea of non-invasive testing, I do feel it made my situation so much better for me having the amnio. Not only could I grieve and move on and get excited for the birth, she got all the extra pre-natal care, and we gave birth at a major centre (because of the surgery she needed not the DS). But my little hospital just can't handle too much, and rather than have an emergency and be airlifted out, I got to go to the hospitals, meet with NICU staff, check it all out so I was prepared.
However, I was lucky and had good doctors, so many don't get the info they need to make such a decision. I wish they could make it law instead of having a "cut off date" (of which I was 33 weeks when I got my results and was told if I wanted....) there should be a mandatory wait and must see a support group or family with a child with DS. If I ruled the world.... Wink

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Kasey, mom to Paige (4), Leigha (0!)

Momtoseven · Posted: March 15 2011, 12:05 PM Post subject:

That would be so beneficial. I remember asking the genetic couselor if she could refer me to a family who had a child with ds. I just wanted to talk to someone. She claimed to not know one family - I found that very hard to believe since she was a genetic couselor. I did talk to an adoptive mom, but her situation was not comparable to mine. Violettesmom posted about this website and e-book for newly diagnosed parents:

http://downsyndromepregnancy.org/

At the very least all hospitals should be required to refer newly diagnosed parents to this site.

_________________
Maureen - Mom to Daniel(24), Brandon(22), Jordan(16), Thomas(14), Carrie(10), Samuel(7) and Mark (4)
https://www.carepages.com/carepages/MarkEdwardC32708