Read Online Saving Henry by Laurie Strongin - Free Book Online Page B

smiling face. We shared dinners, heartache, and advice on computer software. Dr. Auerbach’s office was covered with photos of kids like Henry who were, when it came to science, waiting for something to change. After spending dozens of years confirming death sentences, she saw the potential of PGD to eradicate Fanconi anemia. She encouraged two prominent colleagues of hers—Drs. Hughes and Rosenwaks—to expand the use of PGD beyond testing for the presence of disease by adding HLA typing. She was the one who suggested that they try first with Fanconi anemia, given the dire consequences associated with it. And it was she who identified us as one of only two families that met the stringent criteria that Dr. Hughes set forth for patients selected to serve as PGD pioneers.
    Dr. Zev Rosenwaks is the director of the Center for ReproductiveMedicine and Infertility, the world-renowned infertility clinic at New York–Presbyterian Weill Cornell. He is one of the most, if not the most, respected fertility doctors in the world. With leading-man good looks that matched his celebrated reputation, Dr. Rosenwaks emanated confidence, and within minutes of meeting him we had no doubt that we were in the very best hands. He had been part of the team that produced the first test-tube baby, and he had worked on the first PGD case. In 1997, he and Dr. Hughes were able to successfully help a couple—both carriers of the recessive mutation for sickle cell disease—use IVF and PGD to achieve a pregnancy with an unaffected embryo. The couple delivered healthy twins at thirty-nine weeks’ gestation and proved that PGD can be a powerful diagnostic tool for carrier couples who want a healthy child and want to avoid the difficult decision of whether to abort an affected fetus. Dr. Rosenwaks’s success in helping women get pregnant through IVF has resulted in a celebrity following and a long waiting list.
    Once our third baby was born and the umbilical cord blood was retrieved and properly prepared, Dr. John Wagner would perform Henry’s stem-cell transplant in Minneapolis. Dr. Wagner is a young, earnest, hard-working, unassuming stem-cell-transplant superstar on the rise. He specializes in Fanconi transplants, which are among the most challenging. He has watched far too many young children die. PGD was the first scientific advancement in a long time that would make his heartbreaking job easier.
    As far as we knew, there was not another doctor in the world better equipped and motivated to save Henry’s life than Dr. Mark Hughes. In 1993, Dr. Hughes’s research was named “one of the ten most significant developments/discoveries in all of science” that year by Science magazine. In 1994, he published a paper in the New England Journal of Medicine describing the first successful use of PGD for disease prevention. Dr. Hughes, along with colleagues inLondon, had used PGD to ensure that a couple at risk of having a child with cystic fibrosis had a healthy baby instead. Dr. Hughes was among the group of nineteen leading bioethicists, sociologists, physicians, scientists, and public-policy professionals recruited by NIH to join the Human Embryo Research Panel, a federal advisory committee charged with creating guidelines for the government’s support of embryo research.
    Soon thereafter, NIH recruited Dr. Hughes from his lab at Baylor College of Medicine in Houston, Texas. NIH’s National Center for Human Genome Research funded Dr. Hughes’s work through a government contract with Georgetown University, where he would continue to develop methods for extracting DNA from single cells for genetic diagnosis.
    In September 1994, the Human Embryo Research Panel recommended that embryo research be funded by the federal government. The panel found that the “promise of human benefit from research is significant, carrying great potential benefit to infertile couples, families with genetic conditions, and