To Test or Not to Test

Carol, 41 and newly married, was deliriously happy to discover she was pregnant. Determined to give her baby the best possible start in life, she consented to a myriad of tests her doctor prescribed, since Carol, by virtue of her age, was in a high-risk group for birth defects. The results came back. Her baby had Turner’s Syndrome, a chromosomal defect that causes mental retardation. What should Carol do?

Thirty years ago families didn’t face horrible choices like this. Everybody knew that childbirth was the luck of the draw; you pray for a healthy baby, but you may not get one. Today, technology has changed our whole approach to pregnancy and childbearing. Yet too often in medicine we do things because we can, instead of asking whether we should. Most doctors consider prenatal testing routine, and parents, assuming the doctor knows far more than they do, agree. Yet the tests are neither 100% accurate and safe nor as morally neutral as they seem.

The Reason for Prenatal Testing

Prenatal testing can find both chromosomal problems (such as Down Syndrome) and structural defects (such as heart problems). The three most common tests are:

1. Maternal Serum Alpha-fetoprotein (or triple screen), usually performed at 16-18 weeks. This is a simple blood test which shows elevated risks for some chromosomal abnormalities and neural tube defects (like spina bifida, where the spine doesn’t fuse, or anencephaly, where the brain doesn’t form). For every problem the screening detects, 49 "positives" are given where there is no real defect.
2. Ultrasound, which is performed around 16-18 weeks, allows the doctor to verify dates of pregnancy and get a good look at the development of the baby.
3. Amniocentesis, in which the obstetrician inserts a needle into the abdomen to remove some amniotic fluid, detects chromosomal problems quite accurately. It is associated with a .5-1% risk of miscarriage. If performed earlier than 15 weeks, the risks are tripled, and an association with clubbed foot is found. Around 2% of samples can’t be used, and the procedure has to be repeated.

While about 80% of mothers will have an ultrasound, the other tests are usually prescribed only to high risk groups, which in many cases is defined as anyone over 35. Research has yet to show that having any of these tests actually gives you a healthier baby.

Prenatal testing is different from other medical tests in one simple way: the goal in most cases is not the elimination of any disease; it is instead the elimination of the person who has the disease. In the 1970s, when such testing became available, Alabama was one of the first jurisdictions to declare this outright, claiming it to be state policy "to encourage the prevention of birth defects and mental retardation through education, genetic counseling and amniocentesis…". Since we cannot treat mental retardation, the only way to prevent it is to prevent the birth of those who have it.

That is the same reason that ultrasound is offered at 16-18 weeks: the baby is mature enough to detect abnormalities, yet young enough to abort. After our second child was born with Down Syndrome and a heart defect, we were told to return to the Hospital for Sick Children in Toronto when I was 17 weeks pregnant with our third child to make sure she was healthy. The cardiologist detected another heart defect, but couldn’t be certain since our daughter was so small. We had to return once again at 21 weeks for a final diagnosis, which showed Katie to be perfectly healthy. Afterwards, I asked the cardiologist why we had come at 17 weeks if he could see so much better at 21? Because, he said, "we have to leave time for the parents to abort if they so choose."

Thankfully, some conditions can be treated in utero. Bladder blockage, which once led to death in 98% of cases, can now be treated surgically while the baby is still inside the mother. Approximately 80% of these children now survive. Doctors are also experiencing breakthroughs with surgery for spina bifida while in the womb. Yet the vast majority of defects are still untreatable.

The Results of Prenatal Testing

Life and death decisions are being made because of these tests. Carol chose life when she was told her daughter had Turner’s Syndrome. She is grateful now, as six-year-old Victoria is in perfect health. Her amniocentesis results fell within the 2% error rate. Yet most couples choose death instead.

In 1996, we chose to carry Christopher, our Down Syndrome baby, to term. We were later told that we were the only ones of the 25 couples seeing our geneticist that year who opted not to abort a Down’s baby. Similarly, the journal Prenatal Diagnosis reported that in one English study, abortions after prenatal testing had led to an 86% reduction in the birth of individuals with neural tube defects.

People are even choosing to abort for conditions with no clear-cut outcome. For example, sex chromosome abnormalities are detected in amniocentesis in about .3% of cases, and in one study, 60% of such babies were aborted. Yet though some of these children would have suffered infertility and behavioural problems, nearly all would have had a normal life span, and most would have had normal intelligence levels. People simply do not understand what certain diagnoses mean. So what do parents do when confronted with these choices? Most, today, abort.

It’s hardly surprising, then, that disabilities are becoming viewed not as random occurrences, but as something which can and should be prevented. Melissa Andrew, a medical student writing for the Canadian Medical Association Journal, describes how parents often feel pressure from family, friends, society, and especially their physicians to abort. The life of a disabled person, it seems, is simply not worth living.

Prenatal testing is used as an instrument for deciding who has the right to live, and who does not. This is a slippery slope indeed, when we judge people not by their inherent worth as God’s creations, but by what we think they deserve.

Mary Wilt, the mother of a child with Down Syndrome, was devastated to find Internet web sites dedicated to "courageous parents" who made the decision to terminate pregnancies of "defective" children. The unspoken accusation is that those who give birth to these babies are less courageous and less loving than those who kill them.

What will this mean for support systems for parents of the disabled? With health care in Canada in such a state of flux, it is conceivable that health insurance could at some point be denied to parents who choose to have a child whose disabilities were detected in the womb.

Even with prenatal testing, the numbers of children born with birth defects is remaining stable. Indeed, without so many selective abortions, the rate of birth defects would actually be increasing. Yet parents’ attitudes have changed. Dr. Stephen Brown, the co-director of the division of clinical genetics at the Columbia-Presbyterian Medical Center in the United States, says, "the average prospective parents [today] think it’s their right to have a perfect baby and that physicians can tell if they’re going to have a perfect baby. But by and large, we cannot." Most problems, such as blindness, deafness, and mental retardation, are not detectable. Yet we expect a perfect child, and we rage at God when we have one who is not.

Weighing the Pros and Cons of Testing

The ethics behind prenatal testing are far from clear. Yet can Christians use them ethically and beneficially?

• Relief of Anxiety

In the vast majority of cases prenatal testing relieves anxiety, since most babies are healthy.

• Time to Accept Defects

Being warned that your child has birth defects can be helpful. Having the four months to prepare for Christopher’s birth was invaluable to me. We could grieve before he was born, leaving us free to bond when he arrived.

• Better Medical Care

Testing can help you to provide better medical care to your child. Not all hospitals in Canada have the same facilities. If you know your child has severe problems, you can arrange to give birth in a hospital with a neonatal intensive care unit and with other medical specialists in attendance.

• Incorrect Diagnoses

Nevertheless, there are some significant drawbacks. After having a stillbirth daughter, Paul and Judith Colley of Kingston, Ontario, had a triple screen test during their second pregnancy which revealed an elevated risk of Down Syndrome. Throughout Judith’s pregnancy they were worried, though their daughter was born healthy. Not having the screening performed would have saved them much anxiety.

• Pressure to Abort

If you do find out that your child is in some way handicapped, you are sure to encounter pressure from medical personnel, friends and even family to abort. This can be an added stress at a very difficult time.

How to Decide About Testing

With these different benefits and drawbacks in mind, here are some suggestions about how to approach prenatal testing:

1. Decide what information you need to know

   Decide first if you want to know anything at all. Until relatively recently, parents didn’t know anything until the baby arrived, and this is still a valid choice. If you do want some information, decide if knowing about possible chromosomal problems is worth the risk of the false positives that the triple screen gives. Then decide if you want to know of any structural defects. This will help you to narrow down what tests, if any, you want.

2. Decide what you will do if your baby has birth defects

   If you decide that you will not abort no matter what, then you are much freer in terms of the timing of the tests. Talk to your obstetrician about your views, and make it clear that you want tests performed when they are most accurate and safe, and not when it is most convenient for abortion.

3. Don’t have any test that could harm the baby unless necessary

   The vast majority of amniocentesis that are performed are done for routine screening, rather than to confirm any diagnosis. Amniocentesis does carry risks, albeit small ones, to the baby. Make sure there is a good reason for the test before you perform it.

4. Make sure you and your spouse are in agreement about what you will do before you perform the tests.

   If you find out your baby has serious problems and you have not discussed with your spouse what you would do in this case, you may be facing a huge marital crisis. In such cases, we were told, 50% of couples separate within a year. Try to agree beforehand so that you do not have to argue about life and death when you are in the middle of emotional turmoil.

5. Remember that God is ultimately in control