The Match: Savior Siblings and One Family's Battle to Heal Their Daughter

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9780807072868: 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 ofKatie'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.

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About the Author:

Beth Whitehouse is a Pulitzer Prize winning reporter for Newsday and an adjunct professor of journalism at Columbia University’s Graduate School of Journalism. Her front-page series "The Match," the basis for this book, won numerous awards, including the American Association of Sunday and Feature Editors First Place for Narrative Feature Writing, the National Association of Science Writers "Science in Society" Award, and a Casey Medal for Meritorious Journalism in service to children. Whitehouse lives on Long Island, New York.

Excerpt. Reprinted by permission. All rights reserved.:

Prelude
 
May 24, 2006

 
Stacy Trebing yanked off the yellow paper hospital gown that covered her shorts and T-shirt, unhooked the surgical mask from behind her ears, and stuffed both items into the garbage pail in the entryway of her daughter’s hospital room. She’d been at her threeyear- old daughter’s bedside practically every minute of the past ten days.
 
She needed a breather.
 
The next morning, Stacy’s daughter would have a bone marrow transplant, a medical procedure that would either cure her or kill her. Every minute since Katie’s birth had been leading to this day. Everything Stacy and her husband, Steve, had done, every decision they’d made, had propelled them here.
 
Including the most controversial of their choices: to create a new human being they had selected as an embryo because he genetically matched a critical portion of his sister’s DNA.
 
That one-year-old baby would be brought into the hospital the following morning to donate the life-changing bone marrow that was the only chance to heal his sister. Christopher Trebing was born to be a member of the Trebing family, but he was also born with a job to do. He would be put under general anesthesia while a doctor inserted needles repeatedly into his hips and siphoned the tissue that could repair Katie’s ailing body.
 
Stacy headed to the ninth floor’s family sitting room at Memorial Sloan-Kettering Cancer Center in Manhattan and sank onto the couch. It had been an exhausting time readying Katie’s body for the transplant, watching chemotherapy drugs flow like poison into her daughter’s body, knocking out Katie’s immune system so her body couldn’t fight off Christopher’s gift.
 
Katie seemed so different from her usual spirited self. Just one month earlier, she had been bouncing on the trampoline in the Trebings’ backyard, her white poncho flying into the air as she ricocheted up and down. Katie, who loved to race to the basement and dart back upstairs dressed in her pink fairy costume with wings. Katie, whose dimples were cut into her cheeks as though they’d been etched with diamonds.
 
But now Katie had zero immunity to any foreign invader, no defense against any germs, and a common cold could mean tragedy. She was in isolation in a hospital room, attached to a web of IV tubes.
 
Katie and Christopher wouldn’t see each other on what the doctors called Day Zero. Katie would stay in isolation in her room, and Christopher’s marrow would be transported in an IV bag and dripped into her. Doctors told Stacy that because it had been so difficult to get an IV into Christopher’s veins during his preoperative blood testing, they might have to go through a more dangerous route, a vein in his leg, to administer anesthesia. Stacy feared for both children.
 
As she sat, Stacy wasn’t dwelling on the many ethical issues that troubled the bioethicists and critics who thought no baby should be conceived with a purpose: Who would protect the medical interests of what was referred to as a “savior sibling” when his parents were so focused on curing the older child? How would such a baby feel when he grew up and learned he had been brought into the family with a responsibility? Who would object if the child was later called upon to donate something more radical than bone marrow to help the sibling—a kidney perhaps?
 
As his mom, Stacy had more personal concerns: How would she feel if Christopher’s much-anticipated bone marrow donation didn’t work? What if Katie’s body rejected Christopher’s marrow and Katie died? Would it change how Stacy felt about Christopher? Would it make it hard to be his mother? If anything ever happened to Katie, Stacy asked herself uneasily, would I be resentful toward him?

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