Sounds Like a Plan

Sounds Like a Plan

By Rebecca O’Connell

Sounds Like a Plan_WI07Dr. O, My OB-GYN, called to say that the plan was illegal in Pennsylvania, where I live, but it was legal elsewhere. Not only that, but it was the very best source of organs for sick babies, since the organs would be new and strong and free of disease. He was expecting a call back from a transplant specialist; the specialist would find out where we could implement the plan.

I thanked him. It was his idea, but I was completely on board. I wasn’t so sure about my husband, but I figured I could convince him.

I was carrying a twelve-week-old fetus with anencephaly: no skull. I’d seen the ultrasound the day before. It was very clear. There were its little legs, its arms, its bright-white spinal cord, and there was its brain: exposed, naked, all the whorls and swirls plainly visible.

Well, I thought, we can make him a helmet. I’ll knit him a nice, wooly hat to cover it up. We’ll replace it as he grows. We’ll manage. He’ll be fine.

But I was telling myself a story. The truth of the matter dawned on me, even as I visualized the cap I would knit my baby: No one can live without a skull.

The doctor performing the ultrasound confirmed it. No, the baby could not live outside the womb. No, the pregnancy was not likely to end spontaneously.

“Well, then, what am I supposed to do? What do people do?” I asked. Screamed, kind of.

The doctor patted my shoulder. The ultrasound tech gave me a Kleenex. “The counselor will be in to speak with you,” she murmured.

I’m sure the counselor was warm and responsive, but I have no idea what she said. I think her main job at that point was to hand me things—a box of tissues, a paperback book called Empty Arms: Coping with Miscarriage, Stillbirth and Infant Death, another box of tissues when I’d used up the first one, a four-by-three-inch glossy print of my ultrasound. This last item she procured for me after repeated requests. “I don’t want to seem morbid,” I explained over and over, “I just want to have something to show my husband.”

My husband was at work that morning. He’d already taken time off to go with me to the ultrasound at five weeks, the one I’d had after some scary early bleeding and a blood test indicating low hCG. He’d been there for the one at six weeks, at which they’d seen a heartbeat after all, and after which we’d gone out to Ritter’s Diner for a huge waffles-and sausage-and-eggs-and-orange-juice breakfast. He’d come to the one at ten weeks, when I was supposed to get the CVS test, but didn’t. A CVS (chorionic villus sampling) test can detect the same fetal abnormalities as an amniocentesis, only earlier; my doctor had postponed it because the fetus was too small.

Small, but still within normal range, so I wasn’t worried. I’d seen the heartbeat. I’d seen the fetus whirling around on the ultrasound screen. I’d had a little bit of morning sickness, and my jeans were tight at the waist. Things were fine. I could go in on my own at twelve weeks for the CVS. I could drive myself home afterwards. My husband had missed enough work. There was no need for him to come with me to this appointment.

The counselor gave me the picture, along with what I perceived to be a look of incomprehension. Was it weird that I wanted a picture of my doomed baby? The Victorians did that all the time. But my memento mori was an ultrasound, printed in a medical complex offering some of the most up-to-the-minute healthcare in the country. My request must have seemed incongruously nineteenth-century in that technologically advanced setting.

I left the office with the picture, the book, a half a box of tissues, and instructions to call Dr. O.

But first, I toted everything over to my husband’s workplace. There was no privacy in his office, and it was too cold to stand outside, so we had a brief, surreal conversation in the car. We agreed: It didn’t make sense to us to carry to term a baby with no chance of survival. We’d have to terminate the pregnancy.

My husband and I are both prochoice. We give money to Planned Parenthood and support NARAL-endorsed candidates, but my husband was raised in an anti-choice culture. In fact, I’d briefly considered breaking up with him in college, when we’d been talking about a pro-choice rally on campus, and he’d said, “I’m not sure how I feel about that issue.” He’d come around, though, had married himself a Feminist, and gotten her knocked up. But I thought he’d still been a little squeamish when I’d insisted on having the CVS.

“I’m pretty unconflicted about this,” I’d told him. “I don’t want to raise a child who has a severe disability. If the test comes back abnormal, I’ll terminate the pregnancy.” He’d agreed, but the conversation had left him looking like he needed to throw up.

Now, our worst-case scenario had come true.

But that was before we’d ever heard of the plan.  I went home and called Dr. O.

“Can you come in? Right away?”

It had taken me months to get an initial appointment for my pre-trying-to-conceive physical exam, so the prospect of getting to see Dr. O immediately, right now, that very afternoon was intoxicating. Even though I thought all he was going to do was give me the name of the doctor who would terminate the pregnancy, I hurried right over.

“Now, I bring this up not to try to influence you in any way, but just to give you another perspective,” said Dr. O when I arrived for my spur-of-the-moment appointment.

If I carried the pregnancy to term, the baby would not live long, but its organs would be healthy and strong. Dr. O counted out the list of strong and healthy organs: A heart.  A liver.  Two kidneys. Two lungs. That’s six organs, six lives that could be saved if I carried this baby to term. My baby could save six lives; my baby could be a hero.

That “could be a hero” phrase might seem a little bit manipulative, but I don’t think that’s how he meant it, and at the time, I barely heard it. All I heard was a plan. There was an out. There was a way I could stay pregnant. I could grow organs for harvest.

Dr. O wasn’t sure that the local transplant program did this sort of operation. He gave them a call, while I watched and listened and blew my nose. He got the answering machine.

We discussed logistics while we waited for a call back. I wondered how they would get the organs out of my anencephalic baby in time to transplant them. They couldn’t take the organs until my baby was dead, but once my baby had died, the organs wouldn’t be good anymore. “Could I have a scheduled C-section? Could they do the C-section in the transplant hospital, so that the minute my baby was done with them, the organs could be put right into the recipients, without wasting any time?”

Yes, Dr. O assured me, that could be done. He could even give me steroids to speed up my baby’s growth, so instead of waiting another twenty-six to twenty-eight weeks to have the C-section, we could possibly have it in as little as twenty-four.

But what about my son, the one who was four years old, almost five? How could I explain it to him? He would be sure to notice my growing belly. He would know something was up. What could I say? Yes, Mommy is going to have a baby, but the baby is going to die. It’s very sad, but there’s a happy part, too. Your little brother or sister’s heart, lungs, kidneys and liver will go on living in other babies’ bodies.

My son didn’t know I was pregnant. Except for my husband and my friend Cathy, no one did. I was thirty-seven years old. This pregnancy had been planned; this baby had been wanted, but I was cautious, too. I knew that, elderly woman that I was, my chances of having a baby with a genetic abnormality were pretty good: one in one hundred, or something like that. We had decided not to mention the pregnancy to anyone until the CVS results were in. The bleeding, the early ultrasound showing an empty gestational sac, and other reminders of my advanced maternal age reinforced our decision to keep mum, and by twelve weeks in, we still hadn’t told anyone else.

But I’d picked out some names, and I’d found a really cute pickles-and-ice-cream pattern I was going to use on the email announcement once we were ready to share our joyous news. I’d been reading my son lots of picture books about new siblings or the miracle of reproduction, starring litters of kittens, puppies and bunnies.

“Well,” said Dr. O, “how much do you remember from when you were five?”

A lot. I remember my kindergarten. I remember my cats. I remember my sister very clearly. I remember that I wasn’t crazy about her, but I don’t have any trouble remembering her existence. I remember my mother going away to the hospital, my grand- mother coming to stay, my newborn sister coming home and sleeping on my lap on the big orange sofa. And when all that happened, I was much younger than five. If my son found out about the baby and the plan, there was no way he wouldn’t remember it.

“And once he’s old enough to understand, think how proud he’ll be of you,” said Dr. O.

“I’ll ask my husband,” I told him. I thought my husband would probably go for it. I knew, deep down, my husband thought abortion was murder. He would be as thrilled as I was to find out we didn’t have to have one.

“Are you religious?” Dr. O asked. My name is O’Connell, but my face is more like Abrams, Levine, Rabinowitz. You don’t need very sensitive Jewdar to pick up on my Hebraic ancestry, and Dr. O’s Jewdar was state-of-the-art. “Because there is such a thing as shalom bais, a peaceful home.” He gave me a mini-lecture about Judaism and the domestic sphere, the essence of which I took to be that while it would be preferable for me not to have an abortion, it was not worth wrecking my marriage over. If my husband was dead-set against the plan, we shouldn’t do it.

He was. My husband and I have been married for fourteen years, about twelve of them in couples’ therapy. Okay, well, maybe not twelve, but a lot. We’ve been on the brink of divorce more than once, sometimes for years at a time, which is not to say it is an unhealthy relationship. Rather, it’s a relationship between people who have had a lot of practice having discussions.

Once Dr. O and I realized the transplant hospital might be a long time calling back, I went home.

I had just finished debriefing my husband when Dr. O called back. I told him my husband was still on the fence.

“No, I’m on the other side of the fence,” my husband said.

I told Dr. O I’d call him back.

I presented my husband with my case. “Either way, our baby is going to die,” I argued. “If I carry the pregnancy to term, at least its organs can help other babies live.”

I imagined another mother, somewhere, holding her newborn, knowing that, without a donor, her baby would die. We could prevent that. All I had to do was carry my baby to term.

“And have a C-section,” my husband pointed out. It was major abdominal surgery, not without risk, not easy to recover from.

“I know what a C-section is like.” I’d had one with my son. It was miserable, but the whole thing was miserable. A little more misery on top would hardly even be noticeable. And if it resulted in something good, some baby getting a heart or a lung or a kidney or a liver, it would be worth it.

“You don’t have to be a martyr.”

This was from my mother. The conversation had gone from our kitchen to my parents’ living room. My son watched TV down the hall while my family tried to talk me out of the plan.

My dad nodded in agreement with my mom. There is nothing my family loathes more than martyrs. My raised-Catholic husband has a different understanding of the term martyr. To him, a martyr is holy, a person who gives of herself, who suffers for a higher purpose. To us, a martyr is someone who suffers for glory. Oh, that’s all right. Don’t worry about me. You go ahead. I didn’t want to go anyway. I’ll just stay here and clean the grout around the bathtub.

“I won’t be a martyr,” I explained. “I’ll be really low key. I’ll wear baggy clothes. If anyone does notice I’m pregnant, I’ll change the subject.”

“But you would still have to travel at nine months pregnant to God-knows-where this scheme is legal; and leave your son for days and days; and have your baby only to watch it die. You’re my little girl. I don’t want tosee you go through that.” I had answers to all their objections. As in my helmet-beneath-the-knitted-cap story, everything in the transplant-plan story would work out fine. Sure, I’d be uncomfortable; sure, it would be hard onmy young son. But it would be worth it.

Anyway, I didn’t have a choice. I was obligated. If you have a chance to save a life, isn’t it your moral responsibility to do so? I had to carry this baby to term so its organs could be transplanted. It was the only reasonable, responsible thing to do.

And besides, I’d never even gotten to feel the baby move yet. Four more weeks, maybe five, and I’d be feeling the baby kicking in there, flipping like a fish. Each little flip would remind me of all those other babies, the potential organ recipients who would take my baby’s organs and keep them alive for years and years.

Why didn’t my family get that? Didn’t they love this baby as much as I did?

I looked at their faces one by one—my husband, my mother, my father. They didn’t look like abortion-promoters. They looked like sad, shocked old people. They looked like sad, shocked, compassionate old people who regretfully acknowledged that terminating this pregnancy was the right thing to do.

My Husband was against the plan. My parents were against the plan. Maybe they knew something I didn’t. And even if they didn’t, even if they were wrong, at least they were resolute.

Dr. O referred me to Dr. T, another OB-GYN. Dr. T explained about anencephaly. Somehow, I’d thought it meant that my baby was normal and healthy in every way, just without the skull. That’s not what it means. Anencephalic babies are missing the top parts of their brains. If I did carry my baby to term, it might be hours or days before brain stem activity and respiration ceased. By that time, the organs would likely have deteriorated; they would no longer be usefulfor transplant.

That’s why the plan was illegal in Pennsylvania—and most other places. For the transplant plan to work, the organs need to be harvested before respiration ceases. This is theoretically possible because anencephalics are born in a vegetative state. But practically speaking, there are many ethical and medical obstacles to transplanting the organs of anencephalics.

Dr. O may have exaggerated the plan’s viability and minimized its liabilities, but if he had planted false hope, I had tended and watered it.

I had the abortion in the same hospital where I’d seen the ultrasound, the same hospital where I’d had my little boy. It didn’t hurt. I was asleep throughout the procedure. When I woke up, the nurses brought me cranberry juice and crackers. They told me my hair looked nice. Nobody called me a baby killer. No one even implied it. One nurse told me she had had the same operation. Another gave me information about a support group, Unexpected Choices, for people who had decided to terminate a pregnancy when they found out it was genetically abnormal.

Anencephaly isn’t caused by a genetic abnormality. It is a form of spina bifida, something supplemental folic acid has been shown to reduce.

“I took my folic acid. I took it even before I was pregnant,” I told my husband. I told Dr. O. I told the nurses, and Dr. T, and the counselor, and my parents, and my friend Cathy. But maybe I had missed a day. I’d taken the folic acid, but not the multivitamin. I’d had coffee. I’d stood near the microwave. I’d had a sinus infection and fever around week five.

“It’s not your fault,” they told me.

And, “I’m here if you need anything.”

And, “It will get better. Just take it day by day.”

My husband doesn’t want to try for another baby. He never wants to go through anything like this ever again. And besides, we already have a beautiful, healthy, smart, funny, wonderful little boy. Our family is complete.

I can’t disagree.

But I’m taking my folic acid every day. Just in case.

Author’s Note: It has been almost a year since the procedure. A few weeks ago, I started feeling nauseated in the morning. I wasn’t pregnant. I think it was my body’s way of making a sorrowful anniversary. In a more constructive way of commemorating the sad events of last year I joined the National Marrow Donor Program,

Rebecca O’Connell lives in Pennsylvania with her husband, son and two cats.

Brain, Child (Winter 2007)