Saving Henry by Laurie Strongin

pregnancy.
    Testing for HLA—a trait that was critically important to the success of Henry’s stem-cell transplant, but not to the survival of the potential child we were testing—was different. Applying PGD in this way was brand-new. It had not yet undergone extensive ethical review or gained the status of moral acceptability. Together with our doctors, we would have to set our own course through this medical frontier.
    Years later, when news of the use of PGD for disease prevention and HLA typing first broke, it was often grouped with selection for parental preferences like family balancing to have a child of a specific sex, eye color, sports ability, or IQ and reduced to the politically charged term “designer baby.” I had a hard time understandingwhy anyone would go through the physical pain and expense of PGD solely to produce a daughter to help complete the perfect family (mom, dad, son, daughter), or to have a child who could read by age three (not that it is even possible to test for that). Not all girls want to have tea parties, and even smart kids may not choose to fulfill their academic potential. Any parent who doesn’t know that yet will learn it sooner or later. To us, selecting an embryo based on its HLA type did not belong in the same conversation. Our baby’s HLA type was not a superficial desire, but a matter of life or death.
    Others rightly raised objections to the use of a baby’s organs as spare parts. Removing a young child’s kidney or liver to aid a sibling is risky, disturbing, ethically questionable, and deserving of serious debate. But using a baby’s umbilical cord blood—which was all we were going to do—is different. The blood residing in the umbilical cord, where the stem cells used for bone-marrow transplants are found, are typically thrown away as medical waste after delivery. Retrieving these cells causes no harm to the baby. Essentially, it is lifesaving recycling.
    Although Allen and I gave these issues a lot of thought and discussed them at length with our doctors, it was an easy decision to move forward. As with most things in my life, my mom was the first one I called to share our intention to pursue PGD.
    I explained the process, and our decision, telling her everything that I had been keeping to myself, and all the reasons that led me to know that this was the exact right thing to do. The procedure would allow us to wrest control of Henry’s fate from his defective genetic code. We could have a child whom we would love unconditionally and who would not have Fanconi anemia. We believed that our child would gain satisfaction from the knowledge that he or she had saved a life—a status that is revered in our culture and in the Jewish faith. People have babies for all sorts of reasons, and for us, having a child who could live a long life as well as save another wason the top of the list of good reasons. Leaving matters up to fate fell far short in our minds next to the promise of enlisting with a small group of brilliant and compassionate physicians as pioneers on the forefront of a revolutionary advance in reproductive genetics.
    â€œYou know I will support you in whatever you do,” my mom explained, predictably, when I finished speaking. “And I know you aren’t asking our permission. You never did that much as a child, either,” she added, laughing softly. “But I speak for Dad, too, when I say that you have our blessing. We are behind you and will help in any way possible.” She hesitated and added, “I totally understand what you are doing because I would have done anything for you.”
    Though Allen and I would have moved forward regardless of what others said, we greatly appreciated the support of our family and friends—which we received in every single case—because we understood that choosing to pursue PGD would put our family in the crosshairs of what was sure to be a national