Ebook The Match: "Savior Siblings" and One Family's Battle to Heal Their Daughter, by Beth Whitehouse
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The Match: "Savior Siblings" and One Family's Battle to Heal Their Daughter, by Beth Whitehouse
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My Sister’s Keeper in nonfiction: a family’s real-life struggle to cure their daughter by creating her genetic match
Katie Trebing was diagnosed at three months old with Diamond Blackfan anemia, a rare form of anemia that prevents bone marrow from producing red blood cells. Even with a lifetime of monthly blood transfusions, she faced a poor prognosis. Pulitzer Prize–winning journalist Beth Whitehouse follows the Trebings as they make the decision to create a genetically matched sibling using preimplantation genetic diagnosis (PGD) and in vitro fertilization, and proceed with a risky bone-marrow transplant that could kill their daughter rather than save her. 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.
- Sales Rank: #1721211 in Books
- Brand: Whitehouse, Beth
- Published on: 2011-03-08
- Released on: 2011-03-08
- Original language: English
- Number of items: 1
- Dimensions: 8.70" h x .80" w x 5.80" l, .86 pounds
- Binding: Paperback
- 255 pages
From 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.)
Copyright © Reed Business Information, a division of Reed Elsevier Inc. All rights reserved.
From Booklist
The award-winning articles on which Whitehouse based this book provided an illuminating, detailed, extraordinarily moving account of Stacy and Steve Trebing’s battle to heal their daughter Katie’s Diamond Blackfan anemia (DBA), a rare condition requiring monthly blood transfusions that would eventually destroy her organs. The disease was detected at birth, and Katie’s first transfusion came during her first day. The bone marrow of DBA sufferers makes too few red blood cells, but marrow from a genetically matching sibling can effect a cure. Bioethical controversy surrounds such “savior sibs,” born to provide marrow, and the Trebings rode a roller coaster of doubt, hope, and despair. A mother whose experience with the procedure proved heartbreaking urged Stacy to halt medical preparation, though that was part of the DBA Foundation’s “desensitizing process” to help build Stacy’s fortitude in the face of others’ opinions. Two in-vitro fertilization cycles of progesterone injections, egg retrieval, and embryo biopsy produced Christopher, “born with a job to do.” Katie returned to preschool at age five, medication-free, after more than a year of post-transplant meds. Recommended while the savior-sibs controversy continues. --Whitney Scott
Review
“This is a wonderful story. . . . If a disease was killing your child, would you have another baby to try to save that child’s life? And if you did, would you fear that the new child’s life might be in danger as well? These are some of the very difficult questions that Stacy and Steve Trebing asked themselves before Stacy gave birth to another child, a little boy, who helped their daughter who might otherwise have died. Their story is chronicled in The Match.”—Barbara Walters, The View
“The Match is a thought-provoking, extremely well-researched, and deeply personal account of one of the most controversial ethical dilemmas of our time. . . . A great story, and a remarkable work of journalism.”—Rachel Simon, author of Riding the Bus with My Sister
“The Match is a riveting, vividly written tale of what happens when two powerful forces—parental love and modern science—converge to try to help a very brave child through the deliberate conception of another.”—Liza Mundy, author of Everything Conceivable
Most helpful customer reviews
3 of 3 people found the following review helpful.
'Savior Siblings' and painful choices
By Pamela Robinson
In "The Match: "Savior Siblings" and One Family's Battle to Heal their Daughter," reporter Beth Whitehouse recounts the agonizing but ultimately triumphant story that follows a family's discovery that their newborn daughter had a disease that could have eventually killed her.
That disease, Diamond Blackfan anemia, alone would have been difficult enough to handle. But Stacy and Steve Trebing eventually learned of a possible cure for Katie's illness, one that required serious soul searching, with longterm ramifications for their family.
They decided to seek a bone marrow transplant from a sibling, one who hadn't even been conceived yet. So began their journey through the world of genetic diagnosis and in vitro fertilization, and their own struggle to cope with the myriad ethical and moral issues brought about by that decision. The potential for failure was a constant presence as they took each step on a long and complex course of treatment.
Not the least of the many issues was how to deal with the moral issues of having a child to save another. What would the second child think of his own value? What if the transplant ultimately failed? The urge to quietly wonder what we'd do in similar circumstances is a constant companion as each setback or triumph occurs.
The Trebings seem like just regular people forced to face incredibly complicated issues fraught with all kinds of emotional questions. That they succeeded is remarkable, as is the fact that they managed to remain so united under such great pressure.
Whitehouse makes even the most ordinary developments and scenes compelling because they're part of the greater drama of the overall story. Her writing seems to put the reader right on the scene.
Anyone who has confronted life-and-death medical issues will recognize and identify with some of the internal debates the Trebings face. But few have had to face the multiple longterm choices forced on the Trebings.
Once confronted, they stood up with courage and grace. Their decisions, from the outside, may provoke some discomfort but then, fortunately, they aren't choices most of us will ever have to face.
2 of 2 people found the following review helpful.
I wanted the story, not medical commentay
By Dawn L. Moore
I liked the story, but it was very hard to find it in this book since the author spent way too much of the book trying to convince the reading that the medical procedures the family used are morally acceptable.
1 of 1 people found the following review helpful.
Inspirational, real-life struggle and triumph
By Jeanine Debar
When the 5-day series that preceded this book ran in Newsday, I couldn't wait for the paper to come each day to find out what happened to this family, and especially to Katie. When I learned of the book, I had to read it to find out how the Trebings were now; to make sure all was well.
The book exceeded my expectations. Even though I knew the general story (from the Newsday series), I couldn't put it down. Whitehouse writes with such warmth and detail that you feel like you are sitting at the kitchen table or around Katie's hospital bed with this family, weighing in on what the next decision should be.
While the book has a fair amount of medical information, you don't have to be a physician to understand what's going on. For me, it was more about the story of this family's difficult decisions and the roller coaster ride they took for the sake of saving their daughter. You can tell they are real people; a family you could see yourself being friends with. That's part of what sucked me in. Loved it.
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