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But we would do everything we could to delay that dayâs intrusive arrival.
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F rom the moment of Henryâs diagnosis, Allen and I believed that if we made every call, pulled every string, acted as tireless advocates, and pushed our love and science to their outer limits, Henry would escape his fate. We placed our faith squarely in the promise of PGD.
Recognizing that this option was our best and perhaps only hope to save Henryâs life, Allen and I had begun to prepare for our first attempt when I was still pregnant with Jack. We provided blood samples for DNA analysis and HLA typing, met with our doctors, and educated ourselves as best as we could on the process.
PGD begins with IVF, which would make getting pregnant a lot more complicated, painful, and impersonal than my two previouspregnancies. The plan was that when Jack was a few months old, I would begin the IVF process with daily injections of a drug called Lupron to halt my natural egg production. Weeks later, when blood tests confirmed that the Lupron had taken effect, I would add an additional injection of hormones, for a period of six to eleven days, to stimulate superovulation and produce, we hoped, twenty or more eggs, rather than the one egg that I, and most women, typically produce each month. When the eggs reached the appropriate level of maturity, I would take a single injection of human chorionic gonadotropin (hCG) to trigger the final âripeningâ of the eggs. Within the next thirty-six hours, before I began to ovulate on my own, my eggs would be retrieved through surgery and united with Allenâs sperm. Three days later, one or two cells would be extracted from each fertilized embryo and sent to a lab to determine which embryos were both FA-free and an HLA match. Within two days, the doctors performing the testing would call the doctors in the IVF clinic and tell them which of the embryos to transfer to my uterus. After the procedure, I would take daily injections of progesterone until my pregnancy test. All told, this procedure would take about five weeks. Nine months later, the theory went, we would have a healthy babyâour third childâand be assured that Henry would have the life we meant to give him at birth.
It almost sounded too good to be true.
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W hen we began quietly pursuing PGD in 1996, it was neither on the national news nor featured in fertility clinic advertisements. At that point, it was somewhere between a distant hope and an extraordinary dream shared by a small group of doctors and families who believed in the promise of science.
I had no doubt that if my body would cooperate, our doctors would deliver a baby and give us our boy back. The team we hadassembled was comprised of the most brilliant and compassionate doctors, all experts in Fanconi anemia, reproductive health, molecular genetics, or bone-marrow transplantation. Each was a pioneer working at the most controversial edges of science. Each had taken on perplexing medical puzzles that eluded their colleagues and offered hope to patients where otherwise there was none. The challenges they sought placed them before desperate families trying to bring babies into the world or save the ones they had. While success would be a major medical breakthrough, even a miracle, failure would bring death and devastation.
Dr. Arleen Auerbach was, of course, part of the team, and so much more than that. Since we first met her when Henry was just a month old, she had felt familiar enough to be part of our family and has always treated us like we were part of hers. Like our mothers, she was in her sixties, and her children and grandchildren were her lifeâs focus. She spoke directly and authoritatively, and immediately earned our trust and respect. She has provided us with information, access to the worldâs best doctors, and books for our kids. We supported her research and filled her photo albums and PowerPoint slides with Henryâs
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