“Don’t worry. She won’t break.”
This is a classic cliché of new parenthood. “Don’t worry,” nurses say to insecure new parents hesitant to hold their infants. “She won’t break.”
But I know the truth: Babies can break. I broke when I was eight months old, and a year old, and again and again and again. Three dozen broken bones before my twelfth birthday.
And then, at 31, I passed a flawed gene on to my daughter—the gene that caused my osteogenesis imperfecta (OI or “brittle bone disease”) and makes bones fragile instead of resilient.
For my daughter’s second birthday, we bought a child-sized couch to provide a safe place for her—our tiny, fragile girl—to climb without the risk of tumbling from the regular couch to the floor. As she climbed around on the new mini-couch, she fell and broke her leg.
I could not make up a better introduction to the capricious disorder we live with. Last year, my daughter (now 12) fell down a flight of stairs while lining up for a choir concert. She was embarrassed, but fine. A few months ago, she was putting away a laptop computer in her science class when her arm cracked under its weight.
Between her second and fourth birthdays, my daughter had six broken bones. At the same time, my husband and I were grappling with whether, and how, to have another baby. Every child of mine has a 50 percent chance of inheriting OI. While I adored this child with her golden curls and limitless curiosity, I also longed for assurance that our next child might break an arm falling down the stairs but never putting away a laptop.
We went through one cycle of preimplantation genetic diagnosis (PGD), which is in vitro fertilization (IVF) with the added step of screening embryos for particular genetic mutations. Of the four embryos produced from our sperm and eggs, only one did not have my OI mutation. Two weeks after that little bundle of hope was transferred to my uterus, my pregnancy test came back negative.
By that time, the desire that had seemed so simple—to have a strong-boned baby—had become complicated. PGD is emotionally and physically exhausting. It is expensive. But even if we could pay for another cycle, I was no longer sure I wanted to.
The staff at our fertility clinic told us many things—about success rates and health risks and appointment schedules and how to snap the top off a glass vial of powdered hormones, add sterile water, draw the concoction into a syringe, and jam it into the roll of pudge under my belly button.
They did not tell us that our PGD treatment would lead us down a twisted path choked with hard questions about choice, responsibility, and suffering. Questions about whether it is a good or bad thing for parents to choose particular traits for our children to inherit—or not. Questions about whether fertility medicine feeds on a culture that expects parents to meet higher and higher standards for raising successful, healthy children. Questions about what technology designed to prevent the birth of children with genetic disabilities says about the value of people living with those disabilities, like me and my daughter. Questions about whether parents have a moral duty to prevent our children’s suffering.
The weight of those questions, combined with the financial and emotional costs of PGD, was too much. We did not do another cycle.
Instead, we conceived another baby naturally. I knew we could very well end up with another fragile baby. I also knew I could not stomach the sickening lurch of uncertainty I had felt during my oldest daughter’s earliest days, when we suspected she had OI, but did not yet know for sure. This time around, I needed to know, from the beginning, exactly what we were dealing with. I had an amniocentesis done. A few weeks later, the phone call came letting us know that our second daughter did not inherit OI. Two years later, we got the same news about the baby boy who completed our family.
Our journey through PGD, with all of those awful questions, rubbed me raw. But it uncovered a hard, shining truth: If either of those amnios had come back positive, I would have welcomed and adored another fragile baby.
I know, from the most strenuous sort of experience, that life with a broken body can be rich, full, and happy. In the end, I embraced my imperfect body, accepting both its miraculous ability to bear babies, and its heartbreaking ability to transmit pain. I also know that little girls should not break their legs falling off a child’s couch. OI is a menace. I will never stop feeling grateful that our younger two children escaped it. I will never stop grieving that our oldest daughter did not, even as I cannot imagine her being anyone other than the smart, lovely young woman she is becoming.
I do not know whether the choices we made were good or bad, right or wrong. We have the children we have—all three much-wanted, beautiful, imperfect, beloved. We made the choices we made. All I know for sure is that none of them were easy.
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