Saving Henry by Laurie Strongin Page A

debate on reproductive health and bioethics. I expected that some people would accuse us of being irresponsible or unethical or even labeling us as murderers, since PGD involved creating and testing embryos, and selecting and implanting only those that met specific criteria. I also knew that there would be strangers—and friends—who would applaud us for being pioneers.
    Even if I had known the extent to which I would have to balance feelings and opinions—my own and other people’s—I would have proceeded. But I would also have been a lot more apprehensive than I felt at the moment. Instead, primarily I felt relieved—or, more accurately, elated—that there was something we could do to try to save Henry’s life. The only way I could live with Henry’s prognosis was to do whatever I could to change it, even something that seemed impossible. I knew that if Allen and I could find the right doctors with the right technology—which I believed we had—Henry would survive a previously unsurvivable disease. All of these things createda great and necessary distraction from the unthinkable possibility that he could die.
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    I couldn’t sleep. I was three months pregnant and waiting for the test results that would reveal if the child I was carrying had Fanconi anemia: if both of our children would die before they learned to read, climb a tree, or fall in love. We were expecting a call from Dr. Auerbach later that day. She had received the baby’s amniotic fluid and had conducted the test. The results would be revealed that afternoon. I tried to stay upbeat, but I was overcome with dread. I was unwillingly living in a new universe, in which all the things I wanted to care about seemed trivial and stupid. Nothing was as I imagined it would be.
    We got lucky.
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    D r. Auerbach called to confirm that the baby I was carrying did not have Fanconi anemia. We also learned that our baby’s HLA was as opposite to Henry’s as it could possibly be, while retaining the same parents. I cried when I hung up. My tears were still flowing when I called Allen at work to share the great news. I was so overwhelmingly grateful that we were going to have a healthy baby. Before this phone call, and before Dr. Auerbach’s news, I had been filled with so much self-doubt. As someone who had wanted to be a mom more than anything else, the idea that I might not have been able to give birth to a healthy child was devastating.
    â€œHow are you? How are you feeling?” Allen asked. I could hear the relief and happiness in his voice.
    I sat down at the table. I was filled with such enormous relief and excitement: about the new baby, and that we had found PGD, and could save Henry. Allen shared all this with me, of course, andwe agreed that I would call our parents to tell them the wonderful news. As I picked up the phone to call my parents, I realized that Fanconi anemia—a disease I had never even heard of before—had, in that one moment nine months earlier, become my filter. Every experience of my life would be affected by the fact that Henry had it. Every ensuing pregnancy would be marred by the fact that the little baby in my belly could have it. Every job that Allen or I considered had to offer medical insurance without preexisting conditions, and with compassion and flexibility. Every relationship had to offer a quiet understanding of our travails, accompanied by the capacity to give without expecting much in return.
    In what seemed like a flash, one year passed and on October 25, 1996, Henry celebrated his first birthday. It was a very happy occasion. On the day of his birthday, our family and friends arrived, bearing huge smiles, boxes with bows, and a lot of hope. Henry was a walking Gap ad, wearing tan overalls with a tan-and-blue-striped shirt, flashing that smile that dazzled. He clapped excitedly as each guest arrived and each time he tore the colorful wrapping paper off a