Hard Choices in Parenting: The Pre-Birth Phase.

Two summers ago, while I was engrossed in the rigors of building a deck onto our house, my wife ambled outside to me, tending both cold drink and the tradition of dutiful daily inspection. ‘Looks good,’ or ‘It’s coming along, isn’t it?’ were the more conventional phrases of vocal encouragement I’d become accustomed to, usually coupled with a slight grin—or on less successful days, worried looks of concern. This day, however, a deeper, more radiant smile than usual was on offer, and I could tell even before she made a sound, that a more blissful incentive had brought her to my side.

“How many weeks?” I managed to mumble, while allowing a boxful of nails to fall and hide themselves in the dry dirt below our house.

“Could be five, six weeks at this point,” she said coyly. “We’ll have to check at the doctors to make sure—but these home pregnancy tests are hardly ever wrong.”

As, indeed, was the case here. The due date, purported later by the doctor to be March twenty-second of the following year (can calculated dates of conception really be that accurate?), stood before us like a trophy waiting eagerly to be grasped. Like all first-time expectant couples, the closer the date came, the greater the apprehension we felt, as well as the excitement. So, at thirty-four weeks (three weeks from what is considered full term) when we lost our baby, the emotion within led us both to beg the question that no medical practitioner could, or would, ever be equipped to fully answer: Why?

Today, with my wife over five months into her next pregnancy, we hold to the hope that this time she’ll reach completion, resulting in the joy we were both previously denied. Now, due to her prior history of pregnancy my wife is considered “high risk,” a medical term, that to me, first sounded ominous. However, on later reflection, I considered that all the extra rummaging around by doctors, medical specialists, etc., would hopefully result in the greater probability of both a healthy baby and mother. Perhaps being high risk was not such a dreadful condition, after all.

Consequently, where in the prior pregnancy, medical visits were scheduled at monthly intervals, now we began visiting the doctor’s office once a week. As soon as we’d gotten used to our doctor’s both startlingly agreeable and amiable bed-side manner, she began to make noises about the necessities of the ubiquitous “alpha-fetoprotein” (AFP) screening test— ubiquitous that is, for pregnant women like my wife, who are seen by the medical world to be “past it,” and well on their way to old age and infirmity. To put it another way, you might instead embrace the medical abbreviate: Expectant women either at, or over thirty five years of age.

One more test among an ocean of tests, where’s the harm? I thought to myself. Our doctor did little to hinder my rather blasé mind-set. “It’s a matter of course, really,” she said, handing us a green pamphlet to read at our leisure. “ You do, of course, get to choose whether to have the test, at all. Or, you could choose to just have an amniocentesis. However, the AFP should be carried out within the fifteen-to-twenty week window of the pregnancy. Make sure you’ve both read this brochure before you make up your mind.”

Inside the pamphlet, we found that the AFP screening test is part of a program that estimates the chances (or level of risk) of the fetus possessing certain birth defects like Down syndrome or trisomy 18 (mental retardation and physical defects caused by an extra chromosome #18). This level of risk is calculated through combining the results of the test with the woman’s age at pregnancy. If a higher than normal risk is found, further tests, such as the amniocentesis (known as a diagnostic test) are administered through the program. We also learned that the AFP test accurately predicts seventy to ninety percent of fetuses with Down syndrome in women thirty-five years or older.

Like all parents-to-be, my wife and I were hoping for and expecting the best for both pregnancy, and our baby. However, a test to back up our hopes didn’t sound like a bad thing, each of us thinking that a seventy to ninety percent accuracy rate was pretty good. On deciding to have the test (a simple drawing of blood), our doctor told us she’d only contact us if there were any problems.

After three or so days, she called. She told us that the test showed a ‘screen positive’ result, meaning that in our case, calculations predicted a one in eighty chance of the fetus having abnormalities. This risk factor was much higher than those with a ‘screen negative’ (or normal) result, being usually one in two hundred, or above. Further tests, she said, should be administered. Most importantly we were not to worry as statistically most parents-to-be with ‘screen positive’ results go on to find that the fetus is not abnormal, with the initial results proving to be a ‘false positive.’

Five days later, we were booked to see a specialist at a Prenatal Diagnosis Center who would, through ultrasound, search for any signs of Down syndrome or any other visible birth defect. If any were found, given our consent, further tests would then be carried out.

When any prospective parent receives news like this, it’s hard to do anything other than worry. You are left with few other choices, time taking on an elastic quality, drawing out your angst through fear and dread of the unknown. After much prayer, we both felt ready to face the results of the ultrasound. At the appointment, we were shown into a small dark room, where my wife was asked to lie down. There were two computer screens; one for the specialist’s indulgence, the other for ours.

“You should be able to see some of the baby’s features quite clearly by this stage,” she said, quickly tapping away on the monitor’s keyboard. This wasn’t the first scan for our baby, but the others, a good month or so prior, produced images given more to the likeness of baby reptiles. Our doctor had said, “Don’t worry if it looks like a little alien in there; that’s natural—for now.” The ‘little alien,’ I recall, had managed to wave its arms and legs, dancing in an ocean of embryonic fluid, looking more than comfortable and very much at home. Now, with my wife at seventeen weeks, our expectation was beyond extraterrestrials.

With arms crossed, I stood by my wife, trying to portray a cold exterior of reasoning and methodical calculation. As the screen came to life, we were presented with the side-image of a small living being, roughly five ounces in weight, though perfectly formed—to the trained eye. The specialist checked things like skull size, suitable growth rate for the time of pregnancy and thickness of spine. All showed no signs of abnormality. Finally, she checked for blockages in the lower intestine. Here, she was not so happy. Possible blockages could be seen, which might point to Down syndrome. To be sure, she advised us that an amniocentesis test should be carried out.

This test comprised of the removal of a small amount of amniotic fluid from around the fetus, via a thin needle being inserted through the abdomen and into the uterus. The test statistically diagnosed ninety-nine percent of Down syndrome pregnancies and other chromosomal defects. In layman’s terms, we would know to the greatest possible certainty if our baby had a serious deformity. Results would take about ten days. A small risk of miscarriage was possible, though the chance was less than one in a hundred. Again, the choice was ours to make.

Though this slight chance of hurting our baby was in the forefront of our minds, what we had endured over the last five days made us believe that we couldn’t go on not knowing of possible abnormalities for the next four-plus months.

If a miscarriage were to occur, it would probably do so in the first three days. We went home with nothing more to do on our part than wait. And not worry. The specialist had told us that through finding possible blockages in the lower intestine, our odds of fetal abnormality had gone from eighty-to-one, to twenty-to-one (or a five percent chance that our baby would be born abnormal). She remarked also, that if there were a blockage at this time—and not a precursor to Downs—it would normally get “flushed out” during the rest of the pregnancy.

The next ten days, we held on with white knuckles to nineteen chances in twenty being in our favor. I also solemnly looked to the possibility of a Downs baby. A baby that would grow to a toddler, to a child, to an adolescent, to an adult, harboring both mental retardation (sometimes drastic), as well as physical deformity. A person that might never have the understanding to appreciate Mozart, or think himself/herself through the greater questions of life. Add to this, even in this so-called age of acceptance, society’s response to such a person, both growing up and as an adult. Finally, I (perhaps selfishly) considered the cost to my wife and myself as parents of raising such a child. How would this affect our own lives? Could I possibly imagine the extent to which our lives would change? Forever.

Ten days is not enough time to fully come to terms with what could, or might, become reality. When the tenth day arrived, and our stress levels rising to new highs, my wife told me she’d prefer I answered the phone. The eleventh day came, and then the twelfth. Finally, in the afternoon, our doctor called.

The results came back negative. Our child would not, as much as medicine could determine, be born with a serious deformity. There was, however, still the issue of the possible blockage, but that would be later determined.

Perhaps we’d been living with this grave possibility for long enough, but I felt beyond the point of any real relief. I thought a sense of release would slowly sink in, and in some ways it has. But in other ways, the feelings of fear and not knowing are still there.

Beyond that, I think of the very real couples who received news on the same day that their child would turn out to have a severe abnormality. And I wonder what thoughts and choices they would have to contend with; thoughts much more painful and harder to bear than mine.

In retrospect, I’ve consider the choice we might have made in jumping straight to the amniocentesis, bypassing the initial AFP test. Had we done so, we would have saved at least five days of worry. However, doing so would not have qualified us for the ‘Screening Program,’ resulting in us having to pay for the amniocentesis ourselves, some fifteen-hundred dollars (a ‘plus’ of some kind in this experience, I suppose).

The truth is that pregnancies can be hard enough, without additional medical concern. Whoever deemed this period in a woman’s life to be a time given to glowing romance and euphoria, forgot to consider the sleepless nights, aching muscles, cramps, morning sickness, mood swings, loss of appetite, general feelings of apprehension, etc.—and that’s just for the husband.

Past the halfway point now (twenty-three weeks at the time of writing), we look forward, knowing that the countless parental masses who’ve told us ‘life will never be the same,’ are no doubt quite right. They should know. We look to the day, not so long from now, where our baby (a girl, in case you were wondering—we were) will greet us, hopefully and prayerfully in perfect health. And then we’ll know beyond doubt, no matter how long the journey, that surely, surely, it will all have been worth it.

Epilogue: We were indeed blessed with a beautiful baby daughter, later followed by a rambunctious son. Though he's dyslexic, every day brings its blessings... and trials.