The Burden of Choice

For the first week or so, I tried to avoid the whole octuplet story, which was, of course, impossible. I am an optimist at heart; I hope that once all the brouhaha and outrage dies down, we might learn something from this story about the limits and burdens of choice, especially reproductive choice.

In an interview with NBC’s Ann Curry, Nadya Suleman said she kept going back for IVF treatments because she had always wanted a big family, in part to compensate for her own isolation growing up as an only child, which left her with a “deep need to connect.” Everyone, from experts cited in news reports to readers leaving comments on Internet news stories, recognizes the folly in having babies to fulfill one’s own emotional needs, and the irony of a mother trying to foster connection by creating a family so large that deep, daily, intimate connection with her children—the kind of connection that comes from lingering at the supper table or listening to a child’s rambling story that has no point—will be terribly difficult. The fertility clinic that implanted six fertilized eggs (which turned into eight babies), despite medical consensus that six is too many, is being criticized by both the news media and medical authorities.

But how would the story play out if, instead of a single, unemployed mother with six children already, those babies were born to a childless, solidly middle-class couple, to responsible types who had followed all the rules—went to college, got married, worked hard, put money in their 401(k)’s, bought a nice three bedroom/two bath home with a big backyard in anticipation of the children they wanted to have, and then spent years trying to get pregnant on their own before trying IVF? Would we still see them, and the fertility clinic, as irresponsible? Or would we see it as some kind of miracle? Eight babies from six eggs! Imagine the odds! Maybe we’d think it had been a little reckless to implant so many eggs, a little risky, but look, it all turned out okay!

In America, we worship freedom of choice, so long as you accept responsibility for those choices. When it comes to reproductive freedom—the choice to have or not have babies, and to employ any means necessary if biology makes it impossible for you to conceive those children if and when you want them—we are loathe to limit choice, in large part because of “fear…that any effort to direct any reproductive decision made by any individual is to call into question all decisions made by all individuals, including, of course, the decision to abort.”* (For the record, I think abortion should remain legal. I also think, however, that we should be willing to question unfettered reproductive freedom without fear that doing so requires a return to criminalized abortion.)

So we will question Nadya Suleman’s sanity, criticize her judgment and censure the clinic that helped her. But will we ask the larger, and harder, questions of whether we should really be allowing anyone and everyone with sufficient financial means (cash or insurance) to avail themselves of all the choices now made available by the market-oriented medical specialty of fertility medicine?

Freedom of choice is fundamentally a good thing. On Friday, February 13, the New York Times ran a story about women in Iran who, because of increasing access to education and the wider world through television and the Internet, are seeking divorces from husbands who abuse or mistreat them. Having such a choice is clearly progress for these women. They live in a culture where women have had so few choices. Men can divorce women for any reason, men can have multiple wives, men get custody of the children after a divorce. Meanwhile, women who commit adultery can be stoned. In such a culture, choice—the choice to go to school, to marry someone who respects and cares for you, and to divorce a man who treats you badly—is a blessing, a life line that suffering women should grab and hold onto with all their strength.

But having more choices is not always life-giving. In a heartbreaking article in the June 30, 2002, New York Times Magazine, Bill Keller told the story of his and his wife’s decision to abort a child prenatally diagnosed with devastating abnormalities. Keller wrote that, “No one mandates prenatal testing, although it is such an automatic part of the regimen that many expectant mothers believe it is obligatory, and few fight it. My wife is a testing skeptic. She is convinced that if we had just let nature take its course, without sonograms and amniocentesis, ‘we would have lost that baby, but we would not have killed that baby.’ ” Technology, such as prenatal testing, that is at first presented as offering greater choice becomes socially enforced. It becomes very difficult, sometimes nearly impossible, to make a choice other than the one sanctioned by the wider society. One reason that I ultimately had my babies without the assistance of genetic screening to weed out my gene for osteogenesis imperfecta (OI) was that I did not want to contribute to a society that might eventually cease providing public support or health insurance for children whose disability could have been prevented, if only their parents had either chosen to test their embryos before implantation or abort their damaged fetuses.

I’ve spent many recent nights lying in bed and reading stories like Keller’s, stories about prenatal testing and infertility and living with genetic diseases. It’s all research for the book I’m writing about the theology and ethics of assisted reproduction and genetic screening, using my own story to illustrate how devastating and difficult it is to make decisions in light of all the technology available. Some nights I am overwhelmed with sadness at the choices people have had to make, at the terrible burdens choice can bring. And once you make one choice, that brings along a whole new set of choices, and so on and on and on, in a sickening, tragic game of dominoes.

So it is with selective reduction. The choice to pursue fertility treatment, the choice to take medication or implant a bunch of fertilized eggs—choices that are not made in a vacuum, but influenced by a medical system and popular culture that value choice, control and technology—leads to more fetuses than is healthy for either mother or babies. So then women or couples, in consultation with a medical system that has its own interest in successful outcomes, have to choose whether or not to get rid of some of the fetuses. If they decide to reduce, then they have to decide which ones to get rid of. Sometimes the choice is dictated by something as basic as position; it’s easy to get to Baby B with the needle full of medication that will stop its heart, so Baby B it is.

Daniel and I had all three of our children the old-fashioned way, but only after making our own wrenching choices about assisted reproduction and genetic intervention. In 2002, with Leah (who inherited OI—brittle bone disease—from me) in a harrowing fracture cycle that kept her encased in fiberglass casts for most of the summer, we did one cycle of preimplantation genetic diagnosis (PGD). PGD is, essentially, in vitro fertilization (IVF) with an added step of genetic screening. The story of that summer—the questions it forced us to ask, the choices we made—is the subject of the book I’m working on. So if you want the whole story, stay tuned. But here is one small portrait of the burdens that choice can bring.

We went through all the IVF rigamarole—self-administered injections, blood tests, ultrasounds. I produced a whole mess of healthy-looking eggs, but only four of them fertilized successfully. Only one of those four tested negative for OI. That fertilized egg was implanted; two weeks later a pregnancy test was negative. Our PGD/IVF cycle failed.

We had those other three embryos discarded. Destroyed. At the time, in the emotional muddle of caring for a broken toddler while involved in a medical process loaded with questions that were at best, complex and at worst, unanswerable, I thought little of those discarded embryos. Even the other one, the one that was implanted, took up little space in my imagination. I was so tired, confused, hopeful, sad. I got us through each day, and that was all I could do.

Now, however, almost seven years later, I keep thinking of those embryos. I especially think of the one that had a chance. After the implantation procedure, I did everything I was supposed to do. I rested, avoided caffeine and alcohol, tried to avoid stress. But we were looking for a new house, one meeting our very specific needs for accessibility due to my and Leah’s OI (no more than one step at the front door, a bathroom on the main floor, a relatively flat yard, etc.). The day after implantation, after the 24-hour enforced rest period was done, I went to an open house. I came home agitated, anxious and teary, because the house seemed perfect for us, but our agent hadn’t told us about it, and now there were already multiple offers. Eventually, after strained conversations with our agent and her calls to the listing agent, we learned that we never would have had a chance anyway. There was a bidding war that brought the price over what we could afford.

When I got the negative pregnancy test results two weeks later, I refused to participate in any kind of “What if…”, blame-game stuff. We planned to do another cycle but, for reasons I go into more fully in the book, never did. I got pregnant with Meg, who does not have OI, and two years later, with Ben, who also does not have it.

But I’m doing the “What if…” game now, as I read about all these sad choices that other people have made in trying to get pregnant and have healthy babies. I wish I hadn’t gone to that open house. I wish I had stayed in bed, curled myself tightly around that small life inside and protected it. I wish I had honored it more than I did. I know it probably would not have made a difference. With all our science, no one has yet figured out what makes some embryos implant and thrive, and some wither and die. Fertility doctors try to choose fertilized eggs that appear healthy and robust, but the truth is that no one can really predict anything.

Yet, I’m also aware that if that embryo had implanted and thrived, we wouldn’t have Meg. We’d have someone else, but not Meg. We’d love that other someone, we’d have no idea that we could have had Meg, but still…I don’t think our puny little minds and souls are equipped to contemplate or even fully understand the questions about existence, destiny and meaning that assisted reproduction, prenatal testing and genetic screening are forcing us to ask. And yet, still we make choices, and live with the consequences of those choices forever, even if we don’t quite know what all the consequences are.

“A child is not a choice.” That pro-life slogan has always struck me as oversimplified, like most slogans for most causes. But that phrase keeps clanging around in my head as I consider Nadya Suleman and the questions her situation should be forcing us, all of us, to ask about why and how we have children, and how having so many choices contributes to our seeing children as both more and less than they really are. Children are not a guarantee of happiness, connection and emotional fulfillment. But neither are they a product, a commodity we have the right to acquire by exercising unlimited choice, so long as we do everything in our power to ensure that they won’t be too much of a burden on anyone else.

*Mundy, Liza. 2007. Everything Conceivable: How Assisted Reproduction is Changing Men, Women and the World. New York: Alfred A. Knopf. 319.