The Match: "Savior Siblings" and One Family's Battle to Heal their Daughter
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On her first day on earth, laboring to breathe under an oxygen tent, Katie Trebing underwent a blood transfusion that would become the first of an expected lifetime of them. Diagnosed with a rare form of anemia that prevents bone marrow from producing red blood cells, Katie would require a transfusion every month. Without it, she would die. But even with a steady supply of red blood cells from donors, her prognosis was not encouraging. Eventually, doctors warned, iron from repeated transfusions would accumulate in her heart and liver, potentially destroying her organs by the time she reached forty.Faced with their daughter’s devastating prognosis, Stacy and Steve Trebing made the difficult decision to pursue the only known cure for Diamond Blackfan anemia: a bone marrow transplant from a genetic match. Using preimplantation genetic diagnosis (PGD) and in vitro fertilization, they would create a "savior sibling" for Katie, a complex process rife with setbacks and pitfalls. Only then could she undergo the perilous procedure that might save her life.In The Match, Pulitzer Prize–winning journalist Beth Whitehouse tells the Trebing family’s story, from the onset of Katie’s troubling health complications to the birth of her new brother and the culmination of her bone-marrow transplant. Whitehouse follows the Trebings each step of the way as they make the nail-biting decisions to create a genetically matched sibling and proceed with the risky transplant that could kill Katie rather than save her. With the family’s dramatic and emotional story as an entry point, Whitehouse delves head-on into the murky bioethics surrounding PGD: Is it ethical to create a life for the purpose of saving another? Who will protect the medical interests of the "savior sibling" created by scientific manipulation? And who will object if the child is later called upon to donate, say, an organ?Whitehouse asks these questions and many others, seeking answers from doctors and ethicists who deal with such matters daily. She explores the controversial use already made of PGD to select gender and the future possibility to choose traits such as eye color and even intelligence. The Match is a timely and provocative look at urgent issues that can only become more complex and pressing as genetic and reproductive technologies advance. Publishers Weekly Expanding on her five-part Newsday series , Pulitzer Prize–winning reporter Whitehouse tracks Stacy and Steve Trebing and their decision to create a baby boy selected as an embryo as a genetic match for a sister suffering from Diamond-Blackfan anemia, a rare and fatal disease. When he was a year old, needles were inserted into the anesthetized baby's hips and his marrow siphoned to be transfused into Katie. The process, Whitehouse tells us, “would either cure her or kill her.” As Whitehouse follows the Trebings from Katie's diagnosis through Christopher's conception via in vitro fertilization to Katie's painful but successful bone-marrow transfusion, she also touches on some of the ethical issues surrounding “savior siblings”: who protects the child if he later is asked to donate other tissue or even a kidney to help the ailing sibling, and would the parents resent the donor sibling if the ailing sibling died after the bone marrow transfusion? Whitehouse's nimble explanations of complex medical issues in laymen's terms and her penetration of the Trebings' decision-making process will benefit other parents in similar circumstances. (Apr.)
