May 9, 2007

Increased Down Syndrome Testing Prompts Grass Roots Campaign By DS Parents

nyt_down_video.jpg

There's a fascinating article in the NY Times today about Down Syndrome screening, and a couple of must-see videos, too.

When the American College of Obstetricians and Gynecologists officially recommended the newer, much less risky prenatal screening be offered to all pregnant women, not just those 35 and up, Down Syndrome family support groups across the country began an awareness campaign targetting the OB/GYN's who are doing the testing. Their goals: improve the quality of the counselling and information about life with a Down Syndrome kid that expectant parents receive; put growing faces and stories in front of doctors who usually don't see kids older than two days old; and frankly, to preserve and improve the quality of life and community for their own Down's kids.

Apparently, up to 90% of parents decide to terminate a pregnancy after reciveing a Down's diagnosis:

“There are many couples who do not want to have a baby with Down syndrome,” said Deborah A. Driscoll, chief of the obstetrics department at the University of Pennsylvania and a lead author of the new recommendation from the obstetricians’ group. “They don’t have the resources, don’t have the emotional stamina, don’t have the family support. We are recommending this testing be offered so that parents have a choice.”

But the richness of their children’s lives, parent advocates say, is poorly understood. Early medical intervention and new expertise in infant heart surgery stave off many health problems; legally mandated inclusion in public schools has created opportunities for friendship and fostered broader social awareness of the condition.

The two videos accompanying the article provide more context. One has reporter Amy Harmon talking about the issue; it's close to a recap of the article itself.

The other is the story of some Manhattan parents who went into full infogathering mode when their early prenatal tests showed a Down's baby. Their research involved meeting Down's families with older kids, an experience they say was instrumental to their decision to continue the pregnancy.

Can I give a shoutout to the Eames rocker and the Stokke high chair that make cameos in this video without seeming like a goofball? I mean, seriously, Down's families: they're just like us.

Prenatal Testing Puts Down Syndrome in Hard Focus [nyt]
Video: "Down Syndrome - An Unusual Campaign" and "Difficult Diagnosis - A Positive Perspective" [video.on.nytimes.com]
New Recommendations for Down Syndrome Call for Screening of All Pregnant Women [acog.org]
National Down Syndrome Society [ndss.org]
Previously: New Tests Can Detect Down Syndrome At 11 Weeks
Wash. Post Down Syndrome Abortion Editorial Fracas

5 Comments

Choosing to have a retarded child is a moral atrocity. There's no way to get around the fact that Down syndrome causes suffering in everyone involved. The parents who support bringing more people burdened with this illness into the world only want to extend their and their children's suffering to everyone else. They should be named for what they are - evil.

Every child should be loved and valued - but a fetus is not a child until he or she is born - and what kind of perverted monster do you have to be to want your children to suffer their entire life? Only the religious dogma behind the hypocritical "culture of life" is capable of sinking people to this level.

[this is the most obtuse and insensitive and ill-informed and insulting comment that hasn't been deleted immediately from this site. If you actually know someone with Down's or a Down's sibling or child, I want you to comment further after talking to them about this opinion. Then consider for a moment that some people could find the idea of culling fetuses for genetic or physical variations to be the functional and moral equivalent of eugenics. Don't even consider the implications of false positives for prenatal tests. And then go back and see that WashPost article where some duplicitious "pro-life" advocate firebombs "pro-choice" strawmen, effectively foreclosing the possibility of any meaningful dialogue on an important and complex issue, and realize you're doing exactly the same thing from the other, politically obsessed side. Damn. -ed.]

every single sentence in the first post is frighteningly moronic, polarizing, simplistic and utterly false. i'm saddened and amazed that people actually think such crap. poster, i hope if you have children they are smart enough to think for themselves.

Wow. So if babies with Down's Syndrome should be aborted, does that mean we should kill old people who develop Alzheimer's? Or really, just any person with sub-standard IQ levels. Good grief.

What gives you (original poster) the right to say what suffering is?
As a child, my sister's learning disability gave me the opportunity to know many families with children with autism, down's, brain-injury... I never knew these children or families to be suffering any more than the "normal" families I knew. In fact, these families were often closer and more loving and more attentive to their children and community, perhaps because they understood how precious life is--how wonderful achieving milestones are.

The fact is that *everyone* suffers in life. That's what life is all about. We all struggle with learning, with making friends, with getting sick and injured. Life ain't easy for anyone.


Original poster, I have to say that your position is in fact not all that uncommon. Some people do argue that having a child with a genetic abnormality is selfish and wrong - that if the technology is available parents should use it. I dont agree, and I think your analysis is really lacking - look no further than those videos and I find it hard to think of their child, or any child as a "moral atrocity". Those kids are sweet and the parents seem like thoughtful, intelligent, loving people.

Technology now exists to genetically test embryos created via IVF for any number of genetic diseases. You test them, and from there decide which one(s) to implant. Most commonly its used to screen against fatal, genetic childhood cancers, or for a couple to have a baby that is a perfectly matched tissue donor for a sick older sibling. Generally, this is something a majority of Americans can agree with. But, it is also used for non-medical sex selection (hey, I just want a boy, okay?) or adult-onset cancers that are not always a sure bet if you have the mutation. One wonders what other kinds of things some people might like to test for. Thats when it gets really murky.

Here's the thing: right now in the US, there are really no laws that govern how people can use these technologies. Where do we draw the line, if we decide we need one? And who gets to draw it?

No answers here, but will likely be a question more and more parents and potential parents are going to face.

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