eugenics mandates for health care providers

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Wall Street Journal Examines Down Syndrome Detection Test (Nuchal Translucency) - Kaisernetwork.org

An ultrasound test called nuchal translucency increasingly is being used as a method to detect the risk that an infant will be born with Down syndrome, the Wall Street Journal reports. The test involves a blood screening followed by an ultrasound about one week later at 11 to 13 weeks' gestation to determine the size of a fetus and the thickness of its neck. (snip)
The American College of Obstetricians and Gynecologists in January recommended that all pregnant women be offered nuchal translucency. Based on the personalized risk assessment, a woman can then decide whether to undergo a test, such as chorionic villus sampling, or an amniocentesis, both of which detect almost all cases of Down syndrome but have an increased risk of miscarriage, according to the Journal. About one in 800 infants is born with Down syndrome, the Journal reports (Wall Street Journal, 5/8).

We spend several minutes of the first prenatal visit talking with moms (and dads) about all the optional testing available to them. Thanks to ACOG, we must discuss screening to see if the parents carry the genes for CF. Thanks to a few "wrongful life" lawsuits, we must discuss maternal serum screening with all, and amniocentesis with moms over the age of 35. Now, we must also discuss the above cited 'early' Down Syndrome screening.

I work within the system, but there are many days when I just want to become an outlaw, a rebel. I won't. I realize that my rebellious reactions are not necessarily what I am called to! but I do get so very frustrated, I really do.

5 Comments

Alicia, I can't imagine how frustrating it must be to work in a profession where your deeply held beliefs often run completely contrary to "accepted" practices & recommendations. God Bless you.

As you know, I was going to turn down the maternal serum screening option, based upon your recommendation, and simply do the anatomy ultrasound. But when the anatomy U/S turned up issues, I submitted to the maternal serum screen as another screening, and of course the AFP came back high, due to the gastroschisis. And, based upon all the other things found on the U/S, I ended up getting an amnio, another thing I would not have normally submitted to.
I don't know whether the nuchal screening would have tipped us off any sooner as to Emma's issues, and I don't know how I feel about the fear it inspires in new parents.
(I've read stories from women in online message boards about being freaked out by the nuchal screen only to do the maternal serum screen or another ultrasound and find out they had been freaked out for nothing).

It's frustrating on the other end, too, as a patient. To constantly refuse tests, and be counceled about the wisdom of "knowing" and to constantly explain that if you have a baby with birth defects you will love it don't want to have his/her life marginalized by stereotypes even before birth.

It's difficult to make good decisions based on what is a good test to have and what isn't when you don't get any good advice from the practitioners, who are by and large telling you scripted things to protect themselves and their practice from lawsuits.

Wouldn't it be funny if both the patient and the practitioner were secretly loathing the line of questioning, yet playing along and not telling each other what they really think?

Well, I don't know about my practioner, but I refused all tests except ultrasound, and when I found out prior to Christina's birth that she had Down Syndrome(which the doctor's never guessed, this is before the nuchal translucency)they were baffled!
It seems I had 'heard' from a Higher Authority! See my story in May/June Faith and Family magazine.

It must be hard for new mothers today. 21 years ago, when I was pregnant with the Zman, there were a few tests available, but not as many. When they offered what was available, I had only a few questions: "If we find something wrong, will we be able to deliver and care for the baby here? Or would I need to be transported to a bigger city (with a bigger NICU or something) to give this baby a fighting chance?"

They said, no, these tests would only confirm things that could be dealt with in the city I lived in at the time. That being the case, I said no to all testing.

"But don't you want to know if there is a defect with your baby?"

"Nope. We'll have him and love him and raise him (or her), whatever is wrong. I don't want to spend the remaining months of my pregnancy dreading something about which there is nothing I can do."

They shook their heads. I shook mine.

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This page contains a single entry by alicia published on May 17, 2007 1:03 AM.

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