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EA: Prenatal diagnosis


 
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jennifergg
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Joined: 21 Jun 2006


Last Visit: 11 Dec 2007
Posts: 320
Location: Northwest Montana

PostPosted: January 18 2007, 10:01 AM    Post subject:
EA: Prenatal diagnosis
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Several passages in EA are discussions of Beck's feelings about her experiences with a prenatal diagnosis, and the strong prejudice she encountered when she decided to continue her pregnancy, almost twenty years ago. Have attitudes changed, or remained the same in this time?

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Jennifer Graf Groneberg


Last edited by jennifergg on January 20 2007, 2:19 PM; edited 1 time in total
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queenk
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Last Visit: 05 Oct 2007
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Location: South Jordan, UT

PostPosted: January 18 2007, 9:26 PM    Post subject:
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I don't have a prenatal-diagnosis story to share, but my impression is that there's still a lot of negative pressure out there. When I was compiling _Gifts_ I heard many stories about insensitive professionals (as well as several about supportive professionals). With the abortion rate being what it is, it's pretty clear that the general atmosphere of things encourages women to terminate.

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Kathryn Lynard Soper

mother of Thomas (DS) 10/2005
Sam - 2003
Matt - 2001
Christine - 1999
Andrew - 1997
Ben - 1994
Elizabeth - 1993
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jennifergg
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Posts: 320
Location: Northwest Montana

PostPosted: January 18 2007, 11:56 PM    Post subject:
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I don't have a prenatal diagnosis story, either. But even with a real live baby in my arms, we still faced a lot of misinformation and negativity. I remember telling our ped. that Avery was sitting, and he wouldn't believe me until I actually showed him.

That has been one of the biggest surprises for me being Avery's mom...how many people, medical people, know so little about DS. And yet, they _think_ they know a lot. It's very frustrating.

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queenk
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Joined: 08 Dec 2005


Last Visit: 05 Oct 2007
Posts: 74
Location: South Jordan, UT

PostPosted: January 19 2007, 11:21 AM    Post subject:
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Yes, I'm realizing that I need to request a thyroid blood test for Thomas, and that my ped. apparently isn't aware that such a test is indicated for every toddler with DS.

Can we call them toddlers even if they don't toddle? Wink

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Kathryn Lynard Soper

mother of Thomas (DS) 10/2005
Sam - 2003
Matt - 2001
Christine - 1999
Andrew - 1997
Ben - 1994
Elizabeth - 1993
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Suz
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Last Visit: 23 Jan 2007
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PostPosted: January 19 2007, 11:55 AM    Post subject:
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Yes, toddlers are toddlers if they don't toddle. They have the toddler attitude, non?!

Regarding prenatal testing. No, things have not improved. In fact, they are bleaker than ever. With the new recommendation that all women are offered testing, I bet the birth rate for Ds is going to plummet.

I agree re: the medical community's attitude. They consider our children to be 'broken', and their 'fix' is to offer prenatal termination. I know of only one mom who knew beforehand her child had Ds - for the rest of us, it was a 'surprise'. I don't know if as a collective group if we had known beforehand our kids wouldn't have been born. I know for me, turning down prenatal testing was also turning down the (almost automatic) abortion.

I know of one mom who found out her child had Ds at 31 weeks - the nurse at the ultrasound clinic felt it necessary to hand her a phone number for a place in the states that does late abortions.

She felt that having a child with Ds was an automatic ticket to abortion.

I could go on and on...

We've offered our Children's hospital a nice presentation to staff about Down syndrome. They've turned us down. They said, 'We don't need it'. Really?
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ginnym
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Location: pittsburgh, pa

PostPosted: January 27 2007, 11:26 PM    Post subject:
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I had a prenatal diagnosis. And a very positive experience. First off, we had a midwife and they were great. Second, we had a level 2 ultrasound because I have family history of spina bifida and mental/physical retardation. They saw at least 5 markers. We did the amnio to be sure, so that we could be prepared. It never entered our minds to abort. The perinatologist actually apologized for having to tell us that in PA you have until 28 weeks. How often does that happen? I always here stories of the doctors pushing it on people.
No one ever once said anything about not having the baby, or why did we decide to. Family and friends were supportive, at least to our faces, as far as we know. I am sure some did talk at home about how "they" couldn't do it.
We had two showers and went baby shopping and decorated the nursery and everyone got ready for baby.
Our pediatrician is great, as well as all our doctors at Children's and most of the staff. Maeve is actually well known at our Children's. She was on tv for their telephon and everyone just seems to love her! I guess we are one of the few we a positive experience.
Actually the only negative was my bosses firing me. I was a nanny for triplets and one had spina bifida. I was suppose to continue working and be allowed to bring my baby to work. There would be 6 months difference in age. Well, when we found out about the DS, they said my child would be too different than theirs, mainly because their child would be physically disabled and mine would be mentally disabled. Hello? D-E-N-I-A-L!!! And the fact is 7 out of 10 kids with SB also have mental delays that range from mild to severe.

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SeanM - 35
Maeve - 25 August 2006


Maeve's CaringBridge site: www.caringbridge.org/visit/maevemannion

Maeve's First Giving site:
www.firstgiving.com/maevemannion

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"I can do all things through him that strengthens me" - Phillipians 4:13
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ImperfectMe
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Joined: 01 Nov 2005


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PostPosted: January 28 2007, 3:22 PM    Post subject:
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I do believe things are slowly changing as time goes by. Our youngest daughter's birth parents opted not to have any testing done UNTIL they saw some soft markers on an ultrasound. At that point, they asked for the testing and the doctor kept trying to put them off. When they finally stated they wanted the testing done, he said something to the effect of "But I thought you said you wouldn't abort if the tests were positive, so why have them?"

He was trying to protect our daughter from being aborted as the result of a positive test. While they did opt to go forward with testing, thankfully they opted to allow their daughter a chance at life.

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CJ
Mom to:
B (10/96)
E (06/04: DS)
J (09/05: DS)

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