Saving Henry by Laurie Strongin Read Free Book Online

low- and moderate-income families.
    Henry, as mellow as he was, probably had much less conflicted feelings than I about the matter. He adored Grandma and Pop Pop Teddy, who would make the twenty-minute drive to our house every morning. Ted would go to work while Phyllis spent the day with Henry. She had been recently diagnosed with malignant melanoma and felt a special bond to her grandson, whose constant smile threatened to make her forget her own plight. She loved to read to him, Babar especially, and afterward, the two of them would gather on the couch to watch Wallace & Gromit cartoons.
    When we returned home at the end of the day, before Allen or I could even take our coats off, Phyllis would convey, in painstakingdetail, all of Henry’s extraordinary accomplishments over the last eight hours. One evening, as I listened to her recall stories of their trip to the park, and the people’s hearts he had won over, I looked over and noticed that he happened to be wearing yet another new, hand-knit sweater with little woolly sheep that she had just made for him. We were incredibly lucky to have such a wonderful mother nearby who would volunteer to babysit our son and relish every moment of it.
    In May 1996, not long after Henry turned six months old, we found out that I was pregnant. Like any couple trying to become pregnant, we were euphoric. But fear and uncertainty quickly crept in. Instead of calling our parents to share the good news, our first phone calls were to our doctors.
    A few hours after learning that I was pregnant, I was sitting in the dining room when the phone rang. It was Dr. Arleen Auerbach, a preeminent Fanconi researcher. Everyone with a child diagnosed with FA knows to call Dr. Auerbach first. Toiling behind the beautiful gates of Rockefeller University’s ivy-drenched castle on New York City’s Upper East Side, Dr. Auerbach, who manages the International Fanconi Anemia Registry, knows nearly all one thousand FA patients and their families. When Dr. Rosenbaum saw Henry’s extra thumb at birth, a defect occasionally associated with Fanconi anemia, he sent a blood sample to Dr. Auerbach, and it was she who had diagnosed Henry with the disease.
    We spoke for a long time, and when I finally hung up the phone with her, I felt stunned. And elated.
    â€œAllen!” I yelled to my husband, who was upstairs. “Can you come down here? Like right now!”
    A few minutes later, he walked into the sun-filled dining room, where I sat, still in my pajamas, the phone in my hands.
    â€œWhat’s wrong?” he said. “You all right?” He sat down across from me.
    â€œListen,” I said, trying to compose myself. “What would you say if I told you that we could get pregnant and know that our baby was going to be healthy?”
    â€œWell, isn’t it a little late for that?” asked Allen.
    â€œSeriously, just tell me. What would you say?”
    â€œI’d say sign us up,” he said, confirming the obvious.
    â€œWhat if we could also know that the baby was a bone-marrow match for Henry?” I added.
    â€œI’d say we’d found the golden ticket,” he replied.
    â€œWell, I think we just did. It’s called PGD.”
    As Dr. Auerbach had explained to me, PGD, or preimplantation genetic diagnosis, was a cutting-edge, newly available process that could allow us to know at the moment of pregnancy that our next baby was both healthy and HLA-matched to Henry. Dr. Mark Hughes, the chief of the Section on Reproductive and Prenatal Genetics in the Diagnostic Development Branch of the National Center for Human Genome Research at the National Institutes of Health; professor of medicine, pediatrics, and OB/GYN at Georgetown University Medical Center; and a pioneer in the field of reproductive genetics, specifically in single-cell genetic analysis, had figured out a way to combine in vitro fertilization with genetic testing conducted prior to embryo