Fortieth Year of Mourning

Amy called one day, crying uncontrollably. She was pregnant and, because she would be an “elderly mother” at the age of 35, she had been pressured into making the common error of subjecting herself to amniocentesis. The results devastated her. Her doctor told her that her baby had trisomy 18, also known as Edwards syndrome. This disorder is the second most common trisomal abnormality (not in the sex chromosomes) of live births, and carries a dark prognosis. Few such stricken children live out their first year.

We were finally able to calm Amy down by repeatedly telling her, “There is nothing wrong with this baby.” She agreed not to make any decisions until we had done some research. She pulled herself together and promised she would wait for us to call her back in a few days.

On reflection, our declaration of optimism was an amazing statement to make. We hardly know why we said it. After all, the doctor had test results, a piece of paper proving he was an expert, and many years of clinical experience. We had a degree in biology and worked in biotechnology and molecular biology research, which is why Amy called in her panic. Yet, those certainly weren’t credentials enough to be so bold.

That was in the winter of 1993. Here are some of the facts and experiences that must have informed our opinion.

• Rightly or wrongly, we thought that serious birth defects are not that common. No family we knew had a baby with Edwards.
• Our ob/gyn had concerns that our first child would be a low-birth-weight baby, yet he was born weighing in at 8 1/2 lbs., as we told the doctor he would. This was our first personal experience of a doctor being wrong.
• In the history of the human race, only a tiny percentage of mothers had had amniocenteses.
• Amniocentesis is a self-selecting type of test. That is, mothers who are supposedly more likely to have a child with birth defects will opt for the test in larger numbers than those who are not. It also self-selects for mothers who are willing to abort their babies.
• There were new birth defect tests coming onto the market from biotech companies. When introduced, these tests had only small databases of results from which to draw statistics. The medical profession simply didn’t have adequate experience with them. Some tests were admittedly unreliable and never should have been marketed. For example, a test for spina bifida had a false positive rate of 70%.
• Doctors were under increasing pressure to practice defensive medicine.
• A friend had had a position at a research hospital. She witnessed two couples who had been told that their babies suffered genetic defects, were counseled by a bioethicist and chose abortion. She left that hospital when the MD/PhD, who obtained research samples from those abortions, told her that the babies were, in fact, healthy. The insouciance of that researcher lead directly to our friend's resignation.

Together, these points evince a climate of erring on the side of abortion. Fear, ignorance, dubious statistics, defensive medicine, bioethics, biotech desperately trying to emerge from the lab into the market place all created that climate, and still feed it today.

We contacted a research biologist, who, in pursuing his PhD, performed amniocentesis, karyotyping and genetic testing on animals. He told us about amniocentesis from a different point of view, one that laymen and probably most doctors have never heard. He said that the amniotic fluid has many broken and damaged cells, many sloughed off the baby because they are damaged. The chromosomes in the fluid, therefore, are not necessarily an accurate representation of the genetics of the baby. He recommended not relying on the amniocentesis alone to make a decision.

Armed with this information and our knowledge of laboratory procedures, we supplied Amy and her husband with a long list of technical questions for her doctor and the lab. They also requested further testing. Over the course of the next several weeks, the experts couldn’t confirm the Edwards Syndrome diagnosis. Amy and her husband made the tough decision to let nature take its course, and in July of the following year, they had a baby boy, healthy and sans trisomy 18.

This is how it came to pass, Best Beloved, that on the 40^th anniversary of Roe v. Wade we quietly celebrated our small role in saving a baby from the maw of the abortion machine, even as we mourned the passing of so many millions of innocent children.

January 20, 2013