WSJ: A Brother's Survey Touches a Nerve In Abortion Fight

[question everything]

Agonizing Choice

A Brother's Survey Touches a Nerve In Abortion Fight

Mothers Were Asked How They Found Out Their Babies Had Down Syndrome

Teaching His Sister to Read
By AMY DOCKSER MARCUS
Staff Reporter of THE WALL STREET JOURNAL
October 3, 2005

(snip)

CAMBRIDGE, Mass. -- Earlier this year, Brian Skotko, a student at Harvard Medical School, published papers in two academic journals, based on a survey of more than 1,000 mothers. The survey asked an unusual question: How were they told that their child had Down syndrome? One woman said that after her baby was born in 2000, "the doctor flat out told my husband that this could have been prevented… at an earlier stage." Of 141 women who learned through prenatal testing, many said they felt urged to terminate the pregnancies. One said that after learning her amniocentesis results, the doctor told her "our child would never be able to read, write or count change."

(snip)

Researchers estimate there are more than 1,000 genetic tests available or in development that could be used for fetuses -- including ones for conditions that aren't life threatening, could be lessened by surgery, or don't appear until adulthood. Down syndrome is at the forefront of controversies surrounding the termination of fetuses with disabilities because in recent years medical, social and educational changes have dramatically improved the prospects for people with the condition.

(snip)

Lewis Holmes, an author of that study, says despite the high rate, he doesn't believe "the system is tilted toward termination of pregnancy." Dr. Holmes, director of genetic services at the Prenatal Diagnosis Center at Massachusetts General Hospital, says most doctors make "an enormous effort to make sure couples hear both sides." Deciding whether to continue such a pregnancy is a "personal, private agony," he says.

(snip)

A practicing Roman Catholic, Mr. Skotko says he personally opposes the termination of any pregnancy, except when the mother's life is in danger. But he doesn't advocate overturning Roe v. Wade, the Supreme Court decision which guaranteed the legal right to abortion. "We have decided as a society that termination is permitted until 24 weeks of pregnancy," he says. "I respect the law."

(snip)

Despite strides, people with Down syndrome still face many challenges, especially as they age. There is a shortage of independent-living facilities and job opportunities. Adults are at increased risk for a variety of medical problems, such as diabetes. This spring, after Mr. Skotko's articles were published -- in the American Journal of Obstetrics and Gynecology and in Pediatrics, another academic journal -- he started fielding calls from doctors, disability-rights groups and others. Some of his findings were posted on antiabortion Web sites.

(snip)

Write to Amy Dockser Marcus at [e-mail]

URL for this article:
http://online.wsj.com/article/SB112829903217058110.html (subscription)

[dorktv]

1. I remember a woman who wrote an Editoral about women

who got abortions when their fetuses were found to have some defect. She basically said that women who get an abortion were still choosing to have a perfect child. Or something like that.

[roguevalley]

2. I know a woman who has two adult severe downs boys. She looks

a 100 and hasn't had a day off in her life in fifty years. She has the right to have her own choices. This guy, though he doesn't downrate roe can't get pregnant and so he will never know. Give the sick babies to the moralists to raise. I'm sure Bill Bennett wouldn't mind have a few.

[murielm99]

3. There are emotional, psychological and financial costs that

some families simply cannot face.

Perhaps they have already have a child with birth defects, and they are coping with that.

Perhaps they simply want to know what they may be facing.

I had genetic testing when I was pregnant with my third child. If she was going to be born with any problems, I wanted to know. Would I have aborted? I don't know. I would have faced that if and when the time came.

I had testing because I was over 35. And, I had the testing because my son, who is a wonderful person, was born with no soft palate and a correctable kidney problem. Had I known ahead of time, it would not have made any difference, other than that I might have been better prepared for the care and surgeries he needed.

[dorktv]

8. I think the lady was trying to tell these anti-choicers who think

that an elective abortion because of a birth defect is still the same as an elective abortion because you cannot have a child for financial reasons.

[preciousdove]

4. Parents in agony and help seems to be drying up...

I know two families one with a downs daughter won with an autistic son both in there later teens who had come to terms with the limitations of their children that they adored and both are in shock realizing that their children may well out live them (both dads have severe health problems themselves and one mom has had cancer) and that there is no way they can be assured that their children won't be turned out onto the streets at some point or get lost in the system and then needed medical care and medicines may become too difficult for their kids to access. Medicines that keep these kids alive and functioning. They also told me that just slashed SS for these kids and at least one had reached some sort of limit on one parents insurance policy. Neither is capable of living independently but both are capable of being talked into demanding it.

[tavalon]

6. Yep, welcome to our nightmare

Our son is a joy. He is also 10 years old and autistic. In 30 years, he will be my age, but I will be 74 and my partners will both be facing 70.

I can't imagine him not being in our lives. But I can imagine making sure another child born into this family didn't have what he has because it's damn scary imagining him or another child of ours facing the world without our protection.

[question everything]

7. How courageous you are

And, yes, many are now starting to face the problem of autistic adults. Of people who more or less function withing the people they know but what happens when the parents can no longer take care of them, or when they die?

We need to invest in homes for needed adults but... oh, forgot, spending billions in Iraq is of a higher priority.

I hope that in 30 years this country will get its priorities straight.

[Kailassa]

5. Don't Judge.

I refused to have amniocentesis because I would not abort a child just because it was not perfect, and back then (late 70s) amniocentesis was said to have a 2% rate of causing miscarriage. He turned out to be handicapped with a condition the test would have picked up, but he is a wonderful person who we are all glad to have in the family. Well, all except his father, who couldn't handle his child being retarded. Having to look after a handicapped child with no support has the other kids and I in a difficult situation.

So I'm glad I did what I did, but people have no right to judge others who decide abortion is a better choice. The same people who will tell a woman she should not abort are invariably the ones who will judge her and make life difficult while she's struggling to raise her child.