Deciding to keep a pregnancy despite a serious fetal abnormality.

When I was about 16 weeks pregnant with our second child, he was diagnosed with a rare abnormality that appears on an ultrasound as a solid mass, or tumor, of lung tissue. At the time, doctors had only recently begun to diagnose and monitor this condition, called Congenital Cystic Adenomatoid Malformation, so there was limited information about its progression. My husband and I were sent to consult with a doctor who had conducted one of the few studies on CCAM. She had us come in for weekly ultrasounds, and each week, we watched the malformation grow larger, a bigger blot on the screen where the fetal lung should have been. When I reached 22 weeks and some days pregnant, the ultrasound revealed that the mass had grown to a point that it was putting severe pressure on the heart. Our consulting doctor broke the news as compassionately as possible, but she told us this: She had never seen a baby reach term with this type of fetal heart distress. “I wish I could give you some kind of hope,” were her words. The baby would in all probability die before birth; at best, immediately after. We were given the choice to terminate the pregnancy without having to wait for this inevitability.

We had only four or five days to decide. After that, the state would make the choice for us, because we would be outside the timeframe for a legal abortion in Massachusetts, where we live. My obstetrician made it clear where she stood. She called me on day two to inform us that she had gone ahead and scheduled the procedure, “just so you have the option.”

Other women have written about the dark places you go to when you try to make these decisions based on medical information about the fetus. At this point, you’ve spent months imagining what a good parent you’ll be to this new life. Now, you have to face that you can do nothing to help your child. Nothing made me feel more powerful than pregnancy—I was creating life. Nothing made me feel less powerful than confronting my own limitations as I had to at that moment.

The decision we faced was simple in its starkness; terminate the pregnancy now or give birth later to a stillborn. We never had to consider whether we would be able to raise a child with severe special needs. Still, we made this decision the way many couples do. There was no right choice. We had to plow through many ugly truths about ourselves and what we were willing to bear, and make the least unbearable choice. In the end, we decided to cancel the appointment. We didn’t abort. It was the most intimate decision we have ever made as a couple, and not a process that I would wish on anybody. But, it was a choice that had to belong to us, as the parents—and not to my doctor or to the state.

What happened next? The diagnosis we’d gotten was absolutely correct; our son had a large mass in his lung and his heart was failing. After our decision to stay with the pregnancy, I had no more ultrasounds for six weeks. Since the outcome seemed so certain, no one—including me—felt there was any point in watching what was happening as, we assumed, the mass continued to grow. I have few memories of those weeks, other than good friends taking me out for lots of margaritas.

But for reasons that no one understands (I refuse to use the word miraculous), the predicted outcome didn’t occur. Somehow, the trajectory of our baby’s development changed. When the doctors finally brought us back for another ultrasound at 28 weeks, the baby unexpectedly (to say the least) was more rather than less active inside the womb. Our son had grown, or the mass in his lung had shrunk, or something had shifted, so that his heart was functioning normally. He was born at term. He weighed 7 pounds, spent his first five hours in the neonatal ward receiving oxygen, and then went home with us. Over the next year, he was hospitalized twice for pneumonia, and he needed surgery to remove the remaining mass in his lung when he was a year old.

Since then, our son has had no further medical intervention beyond a yearly flu shot. He has no asthma and no allergies. He gets sick no more than his brother and sister. In the end, we somehow got the whole box of chocolates. Ten years later, I’m writing this while listening to my perfectly healthy 10-year-old son pick away at Eric Clapton’s "Tears from Heaven" on his electric guitar.

Tags: abortion, birth, late-term abortion

Deb Sabin lives and works outside Boston, Mass. She has three children.

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