Tales from the Crib
To Test or Not to Test?
By Jennifer Margulis
My friend Marie just emailed that she’s pregnant. She’s 43 years old and has been trying for years. She and her husband have one son who’s autistic. Should I do the first ultrasound, she asked me over email. Should I do CVS? What did you do?
With my first pregnancy I followed the doctors orders, for the most part. I was 29 and in excellent shape. But I found the prenatal visits to be really stressful: the doctors in the practice that I had to go to (because it was the only one my student health insurance would pay for) were rushed, they responded cursorily to my questions, predicting terrible outcomes if I did not follow their advice exactly.
Some people are soothed by the metal tables and scrubbed floors of a doctor’s office. I’m not. But I dutifully went to every check-up even though the stress of going invariably made me cry afterwards. The only recommended test I refused was the glucose tolerance test for diabetes. I couldn’t eat any sugar while I was pregnant and I knew the test would make me very sick. I was already on the equivalent of a diabetic diet, and the outcome of the test would not change anything.
Most people, without understanding that these tests often have false results and can also create problems in the pregnancy, feel it’s better to know definitively about every detail of the pregnancy. But if the knowledge a test gives you won’t change your behavior, why bother doing it? Take Down’s Syndrome. My husband and I wanted a healthy baby more than anything in the world. At that point in our lives—and I don’t know if this is still true for us now—we would not have chosen to terminate if we discovered there was a problem with the fetus. If I were carrying a Down’s Syndrome child or a child with a terminal illness, I would have carried that child to term. So why know? We felt like if there was a problem with our baby we would find out at the birth and deal with it then. To stress out about it for nine months, fretting and wondering and waiting, was not the best option for us.
With my second pregnancy I hired homebirth midwives. My prenatal visits consisted mostly of talking, often about healthy eating and the birth. Instead of a sterile doctor’s office the visits were held in the midwives’ tiny colorful space that had lots of open windows, plants, and books. No medications were advertised on the walls. No handouts about AIDS stood in stiff cardboard casings on the bookcases. It was more like being in someone’s living room than at the doctor’s, and it felt so much better that way.
“Call me back as soon as you can.” My brother’s voice sounded terrible on the message on my answering machine. I rubbed my 5-months pregnant belly. My sister-in-law was also pregnant, just a few weeks behind me.
“We found out Mary’s carrying an anencephalitic fetus,” Zach said.
Anencephalitic. Anencephalitic. I couldn’t think clearly enough to remember what that meant but I started to cry. I knew it wasn’t good.
“The baby has no brain,” he explained. “It’s a medical emergency now and she’s going to the hospital tomorrow to terminate.” Zach’s voice caught. He told me that even if she managed to carry the baby to term, it could be stillborn, and it couldn’t live. A person without a brain isn’t a person.
“Are they sure? What if they made a mistake?”
“They’re sure, Jen.”
The next day my sister-in-law went for the procedure. She had a severe hemorrhage after the operation and the hospital staff went into Code Red. Zach told me he’d never seen people work so efficiently and seriously in his life. The doctor said she could have died.
I sobbed for days. Should we find out about our fetus? Was there something wrong with our baby? Why should my sister-in-law, who had no children of her own, have a problem and not us? It seemed so cosmically unfair. I rubbed my belly and wept. But I also realized that even if our baby was anencephalitic I would carry it as long as I could, until it died in my uterus or out in the world.
Pregnancy testing seems so straightforward when a doctor explains it in his office, but there’s so much more to consider than just the test itself.
Sometimes the tests, (like the amniocentesis), actually lead to miscarriage!
Like you say, it all depends on what you will do with the information.
Each mother has to decide for herself.
Michelle O'Neil - Lynchburg, VA - May 2nd, 7:01 AM
I was 35 when I had my first baby, and 37 with my second. Prenatal testing was recommended by my midwives due to my age. Our actions would not change if we had advance knowledge of a problem, and given the high incidence of false positives we chose to have no testing except one ultrasound. We would not terminate under any circumstances and did not want anything to mar the joy of expectation. Besides, I had enough morning-noon-and-night sickness to worry about!
Linda Peters - Houston, Texas - May 2nd, 7:23 AM
Jennifer, I definitely understand what you're saying here. I went and had all the tests. While I wouldn't have terminated a pregnancy, I'd have liked the chance to prepare for any predictable issues before birth, so that day wasn't spoiled by a scary surprise. I also would have liked the chance to find a support group as early as possible. Happily, my daughters were born healthy. We've been through a lot since... but who hasn't?
Martha - Seattle, WA - May 2nd, 8:08 AM
I feel the same way. I've had 6 miscarriages and every test imaginable. With 2nd viable pregnancy, we lost one of the twins. My OB recommended AFP testing, which came back positive. We spent 3 days in Hell before reaching my perinatologist, who said I should never have taken the test. AFP has a VERY high incidence of false positives. But in my case, the "vanishing" twin had caused the false positive. My daughter is 18 months old and in great health. I doubt we'll test much if we have another.
Annabelle Robertson - Lompoc, CA - May 2nd, 8:20 AM
Great column, and I can really relate to it. I'm now 3-months pregnant with my fourth child (at 36), and we just signed a waiver saying we do *not* want any prenatal testing beyond routine ultrasounds. It's kind of scary to skip the tests (and be left to imagine the worst), but abortion simply isn't an option for us. Given that, we've decided to pull back and just treat this pregnancy as the blessing it is -- come what may.
Holly - Frederick, MD - May 2nd, 8:31 AM
It's always nice to know that folks like Jennifer have more knowledge, experience, and wisdom that the physicians who spend 8 years in medical school, residency, etc and have participated in ten times more births than any midwife. Commentaries like this spread the disease of misinformation. . . .
Whatever Jennifer. . . - Ashland - May 2nd, 8:33 AM
As a nurse practitioner, I spend a lot of time discussing this topic. I find most women want an ultrasound even though there is no reason for obtaining one unless there are problems. But the picture/info gives them peace of mind. Although it is true that many women would still choose not to abort if they discover problems, most want to know in advance so that they can psychologically prepare themselves. There is no right or wrong. It is a personal choice that should be supported either way.
Peter - Niamey, Niger - May 2nd, 9:36 AM
I was 35 when pregant with my first, and had no tests. All that was available was amnio then. I was anxious my whole pregnancy because I wasn't doing what the doctors had reccommended. With my second I had an amnio. I wasn't sure what I would do if something was wrong with my baby, but I needed to know. For me, that was better. I had my second at home, no medical interference! We're all different, with different needs. There is no one right answer, as "Whatever Jennifer" seems to think
Judy - Oakland, CA - May 2nd, 9:41 AM
I’m having an amnio and not looking forward to it, yet I’m craving the results. After 3 positive ultsnds, still my blood results came back 'high risk'. Everyone's beliefs are different as are their circumstances regarding support, finances and freedom to care for a child with a severe disability. It's just that once we become fearful, we crave affirmation that all is well. These tests can prove that almost everything is ok and certainly no one should be judged for wanting to know that baby is ok
Anonymous - Medford - May 2nd, 9:42 AM
Such a thoughtful essay, Jennifer. With each of my pregnancies, I've ratcheted back the medical involvement I allow, and been much happier for it.
caroline - san francisco, ca - May 2nd, 2:47 PM
Some "need" to know the baby's sex beforehand, and some don't. Some want every drug during delivery, some don't. Some want to know ahead of time if there might be a problem so they can mentally prepare and make decisions, and others prefer not to worry for nine months and to deal with whatever happens when/if it happens. The point is to support parents and help them feel confident so they can try to do the best they can for their kids, not discourage them or make them feel inadequate or wrong
Dawn - Casablanca, Morocco - May 2nd, 6:17 PM
I was 36 when I was pregnant the 1st time. I was
seen by midwifes in a hospital. I felt
pretty comfortable with them, and actually safe.
The apts were pretty mellow, most of it was like
Jennifer's home midwifes experience. I didn't
have the amnio because I felt the AFP4 and level
2 u/s would be sufficient to tell us what we
needed to know. We didn't feel strong enough to
take whatever life gave us and always kept the
option of terminating if something was
wrong. We have 2 healthy bb's.
Nathalie - Medford, MA - May 3rd, 6:59 AM
Definitely a personal choice...no Right or Wrong here. It's kind of a personality test. My analogy: from experience I have found most people do not want to accept this public Fact [just google Grace Commission Report to read about it]: not a dime of the billions collected in personal IRS income taxes goes to pay for the govt services people assume theyre paying for. Most have a knee-jerk reaction at best, and very few take the 30 min necessary to find the truth. Ignorance = comfort.
1speed - ashland, ore - May 3rd, 10:10 AM