The Saddest Day

Diagnosis: Trisomy 21

By Anonymous

The saddest day of my life was not actually the day I cried the most. In fact, I did not cry much at all that day. Part of the day I was under anesthesia, in that state of sleep when, if one is not pursued by nightmares, one has temporary respite from the nightmare that reality is holding. When I had awoke that morning, I felt my belly one more time, coming upon the hard ball just under my navel with our child in it, knowing that at the end of the day it would no longer be there.

Two years earlier, the beginnings of a pregnancy had been scraped out of my abdomen. Then I had cried, too, but this time it was different. There had been no baby the first time, just the beginnings of an embryo that never developed a heartbeat. This time there was a baby. The bleeding at the very beginning of the pregnancy had sent me immediately to the doctor, reminding me of my miscarriage. I expected another D&C, but instead was told that I was five weeks pregnant.

A week later, the embryo showed a heartbeat. As the weeks progressed, things seemed to stabilize, and I began to hope that this tentative beginning might actually lead to a third child at the age of 41. I felt terrible physically, but it was, after all, the first trimester and I wasn't young any more. The baby had a due date and we began to adjust our calendar accordingly.

But the gnawing sense that something was not right was always in the back of our minds. In addition to the usual nausea and exhaustion, I felt as though I had a stone in my abdomen. The only time I really felt good was after a few hours of sleep, but I kept hoping that I would feel better once the first trimester was over. In the 13th week of pregnancy I went in for a standard ultrasound screening. That was five weeks ago, the day we were told there was a high likelihood that our baby had a serious genetic defect. I drove home in a heavy rainstorm, the pelting water on the windshield answering the tears streaming down my face.

My husband and I had previously agreed that we would not have an amniocentesis, in spite of my "advanced" age. After all, as Christians we did not consider abortion an option. I was in good health and kept telling myself that a 97% chance of having a healthy baby was pretty high. All of a sudden we were not looking at a 3-5% chance of a major fetal defect, but something more like 80-90%.

I got on the Internet and found the most relevant medical studies on my ultrasound findings. I spent hours reading the homepages of parents of children with Down syndrome, the most likely diagnosis for our child. I poured over health pages on Down syndrome, discovering that a diagnosis of Trisomy 21 did not mean we could expect to have a child with moderate mental retardation and some manageable health problems.

It could mean that, but the stories and statistics also told another story: 40% have major congenital heart defects; 80% have significant hearing loss (which makes language acquisition - a challenge in any case - even more difficult); many have eye problems (cataracts, cross-eye, near or farsightedness); 12% have serious digestive malfunction, sometimes leading to a colostomy; 5-10% are affected by epileptic seizures, which can cause major brain damage; 3% develop leukemia, usually by the age of three. After falling into the 3% category for a Down syndrome diagnosis, these statistics took on daunting proportions.

The first three days after the ultrasound, I could do nothing but cry. The next days I spent on the Internet, and at the end of the week we sought the counsel of our pastor and our parents. Surprisingly to me, none of them rejected an abortion out of hand, assuming that this was a God-given fate or future that we must accept. My mother-in-aw, looking back on the years with her seriously handicapped son, said that she simply could not intentionally choose to do it over again. For the first time I realized that either choice would have difficult, negative consequences, that there was no "good" or "right" way out of this dilemma.

We decided to have an amniocentesis done, pretty much agreeing that if the results were bad, we would terminate the pregnancy. That was a week after the ultrasound: a short amount of time in actual terms, but seemingly endless in that the decision occupied my thoughts almost every waking minute. I often awakened around 4:00 a.m. and could not go back to sleep. I didn't even dare to hope that the results would be good; in fact, as time went by I started to hope that they would be definitively bad - a trisomy 18 or 13, which would essentially mean that the child would have such serious developmental defects that it would have no chance of long-term survival. Then the decision to abort would not seem so ethically difficult.

My greatest fear was the most likely diagnosis, Down syndrome, because it would not tell us whether our child would be relatively healthy or seriously ill. My husband's cousin had given birth to a child with Trisomy 21 in the fall, who now, months later, was still in the hospital with a major heart defect. I sometimes felt constricting pain in my uterus and wondered if I would even be able to carry the child to term, or if it would be born prematurely, unable to really live and unable to simply die. Friends who work with handicapped people told me that Down syndrome took many forms, some very difficult.

At the same time, I kept seeing people with Down syndrome: a little girl on our street corner, a young woman at the local fair, an adult neighbor walking the family dog, a little boy in the newspaper...and they made me wonder what our child would be like. Maybe it wouldn't be so bad after all. How could I deny a life like that, not knowing?

As the first trimester passed, so did the nausea. I had started the pregnancy underweight, and although I was still not gaining weight, the baby suddenly began to grow quickly. I bought one pair of maternity pants, since the results of the amnio would not come for two or three weeks. I stopped going to work and kept mostly to the house to keep my bulging tummy a secret. For the first three months I had not had a real sense of being pregnant, other than feeling miserable. But now I sensed this growing life within me and began to think of it as our child - our sick child.

At the beginning of the 17th week of pregnancy we received the diagnosis: Trisomy 21. My husband had expected this from the very beginning and did not waver in his conviction that I, as a mother, and we, as a family, would not be able to manage the burden of a seriously handicapped child. He was willing to decide for us, since I felt incapable of making a decision.

There were days when I was barely able to maintain the status quo for our two other children. My feelings vacillated between feeling incapable of caring for a dependent child with special needs for the rest of my productive life, and feeling incapable of killing the life I was carrying within me. I started riding my bicycle again, rode on bumper cars at the fair, hoping that the baby would spontaneously abort. He didn't.

A week after the results came back, I went into the hospital to terminate the pregnancy. That was this past Monday. Looking back on the previous five weeks, I know that I have spent much of that time mourning our child. I have written desperate letters to family members and had agonizing conversations with close friends. I have spent most of my waking hours trying to find an answer - in vain.

I know that I will carry this loss, and the responsibility for this decision, with me for the rest of my life. Several women who have had abortions have said that the pain will heal over time, if I allow it to. Several parents of handicapped children have said that the pain of having the child would accompany me for the rest of my life. We had to make a decision, and we will never know what might have been.


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