Free Saving Henry by Laurie Strongin

individuals and families in need of effective therapies for a variety of diseases.” The NIH Director’s Advisory Committee reviewed and approved the panel’s report, and President Clinton approved it in December 1994, with the exception of a controversial area of research that involved the creation of human embryos for research. The approved guidelines explicitly supported Dr. Hughes’s work on PGD.
    Against the recommendations of the medical and bioethics experts on the Human Embryo Research Panel, and to the heartache of families like us, who looked to this science to save our children, in 1995, Congress passed an appropriations bill that overrode the NIH guidelines and completely banned the use of federal funds for research that destroys or seriously endangers human embryos. This provision, known as the Dickey Amendment (after its originalauthor, former Rep. Jay Dickey of Arkansas), seriously hampered Dr. Hughes’s work, significantly delayed research advances, and probably ruined a lot of sick children’s chances for survival.
    The federal ban disallowed Dr. Hughes from performing his work on PGD as part of his position at NIH. It disrupted the work of countless others as well, forcing researchers to seek private funding or to give up their work entirely. Refusing to abandon his research or the families whose lives depended on it, Dr. Hughes had set up a lab as part of an IVF program at Suburban Hospital in Bethesda, Maryland, a private hospital across the street from NIH. There, with private funds, he continued his PGD work, primarily for couples anxious to screen out deadly genetic diseases.
    When Allen and I first met Dr. Hughes in the fall of 1996, he made it exceptionally clear that this work was being done on his own time, independent of his work with NIH. The three of us hit it off immediately. He was about a decade older than us, but exuded youthful exuberance and clearly took delight in the possibilities that science could offer couples like us. His eyes sparkled and his smile grew as he looked at the pictures of Henry we had brought with us to the meeting. With each new picture, he paused and really looked at Henry. We thought that once he saw Henry, he couldn’t possibly turn us away. We were right.
    Over lunch in Georgetown, he told us what to expect, assessed the potential for success and failure, and discussed the ethical implications. From the moment we met Dr. Hughes, his passion for science and his sense of ethical responsibility has been transparent and admirable. He spent more time talking with us about the risks associated with being among the first to try PGD than he did on its promise. It was he who would later personally meet Allen for the handoff of the cells for testing or call to deliver our test results, as difficult as those calls were, or to check in on Henry. He didn’t look at saving Henry as a means to career advancement, although it certainly would be, but as his responsibility. To him, Henry was the little boy in the picture who deserved a chance to live, taped to the wall in his lab for all to see. WE CAN SAVE HIS LIFE , read the note posted near the picture. Our frequent late-night e-mail exchanges were proof that he wouldn’t rest until he figured out how to save our son.
    Over time, like us, I think that each of these doctors, as they got to know Henry, came to believe that he was invincible. For that to be true, each of them had to excel at his or her area of expertise and then hand us off to the next physician in the chain. These pioneers, and this precarious set of links, would determine the course of Henry’s life.
    Â 
    O n January 9, 1997, when Jack was just thirteen days old, I sat on the couch in the floral nursing nightgown and matching bathrobe that Allen’s parents recently had given me. I heard a thud on our front porch and got up to get the newspaper. It was dark and cold outside. Inside, it was warm and filled with joy. Jack