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The Match

"Savior Siblings" and One Family's Battle to Heal Their Daughter

Author: Beth Whitehouse

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.
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“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


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
1 ìMind If I Take One Last Ski Run?î
2 ìWhat Do You Think It Is?î
3 ìNever in a Million Yearsî
4 ìThis Is a Beautiful Embryoî
5 ìFor Them, the Dice Are a Bit Loadedî
6 ìThis Is for Desperate Couplesî
7 ìWe Have Incomplete Informationî
8 ìI Could Never Do Thatî
9 ìWhy Me? Why This?î
10 ìI Wish We Hadnít Done Itî
11 ìThe Easter Bunny Would Be Jealousî
12 ìCome On, Babyî
13 ìTake an Additional Folic Acid, in Case Itís Twinsî
14 ìThings Look Really Goodî
15 ìSo Much of Who We Are Happens at the Beginningî
16 ìItís Hard to Tell Parents, ëDonít Do Thisí î
17 ìThereís No Black-and-White Answerî
18 ìWeíre Not Going to Stop the Futureî
19 ìItís a Boy!î
20 ìI Like This Place a Lotî
21 ìNow Itís Crunch Timeî
22 ìYou Conceived Your Son for This?î
23 ìWill I Get Handcuffed with My Kids?î
24 ìThis Is Mind-Bogglingî
25 ìBeing a Mom Is the Coolest Giftî
26 ìItís Now or Neverî
27 ìBubbaís My Brotherî
28 ìGood Luckî
29 ìHer Body Is Healingî
30 ìWhy Are You Taking the Lights Down?î
31 ìBack Up and Bling-Blingî
32 ìIt Goes So Fastî
  • Watch the Trebing family on The View

  • Watch a story on WNBC New York about the Trebings that featured Beth Whitehouse and the book

  • Watch a video of Beth Whitehouse's event at the Huntington Book Revue, filmed by BookTV


About the Book

On her first day on earth, Katie Trebing underwent a blood transfusion that would become the first of an expected lifetime of them. Diagnosed with a rare form of anemia, she would require a transfusion every month-or she would die. But even with a steady supply of red blood cells, iron would eventually 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: a bone marrow transplant from a genetically matched sibling. Using preimplantation genetic diagnosis (PGD) and in vitro fertilization, they would create a "savior sibling" for Katie, a lengthy, complex, and emotional process. Here, Beth Whitehouse follows the Trebings' journey and delves into the complex bioethics of PGD. The Match is a provocative look at bioethical problems that are certain to become more pressing as reproductive technologies advance.

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"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."
Publishers Weekly

"The Match is a thought-provoking, extremely well-researched, and deeply personal account of one of the most controversial ethical dilemmas of our time. By allowing readers to walk beside the Trebing family as their daughter's illness leads them to conceive a sibling who might save her life, Beth Whitehouse takes us on a journey so rich in hope, commitment, and love that it forces us to suspend any judgments we might have held. Instead, we root for this family, as they-aided by their tireless relatives, dedicated friends, and team of exemplary medical professionals-step right to the edge of contemporary science. The result is a great story, and a remarkable work of journalism."
—Rachel Simon, author of Riding the Bus with My Sister

"In the quest to cure their daughter, Steve and Stacy Trebing made an enormous and potentially dangerous medical decision-which inevitably led to another decision, and another, and another, as medical decisions tend to do in this day and time. Beth Whitehouse was there with them, witnessing their struggle and capturing it with accuracy and empathy. 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: How Assisted Reproduction Is Changing Our World

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About the Author

Beth Whitehouse is a Pulitzer Prize-winning reporter for Newsday. Her five-part front-page series "The Match," which was the basis for this book, won numerous awards, including the American Association of Sunday and Feature Writers First Place for Narrative Writing, a National Association of Science Writers Award, and a Casey Medal for Meritorious Journalism in Service to Children. Whitehouse is an adjunct professor of journalism at Columbia University.

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Questions for Discussion

  1. At one doctor's appointment, Stacy points to a sonogram image and says, "Look, Katie, there's your miracle baby. Say hi. That was made especially for you. With love" (p. 100). Christopher's being born to save his sister's life has a lot of implications for their future relationship. What are some of the possible problems or benefits of Katie's thinking of Christopher as being "made especially for [her]"?

  2. Should anyone be born for a specific purpose, such as donating bone marrow to another? How might being conceived for a specific reason or objective affect a child's future and relationship with his or her family? Do you think it is unethical? Or are some reasons justified, such as donating blood that will save someone's life, and others not, such as, say, donating an organ?

  3. The Trebings' first child, Calvin, has clearly been deeply affected by Katie's illness, his parents' focus on her treatment, and Christopher's special contribution to Katie's life. How might his understanding of the process his family undergoes differ from that of Katie's, Christopher's, or their parents'?

  4. When Stacy and Steve arrive at Camp Sunshine, Stacy is surprised to learn that other parents don't share their optimism about the bone marrow transplant they hope will save Katie's life. Stacy asks herself, "Am I a bad mother that I want to do this?" (pp. 68-69). How do you think it would feel to encounter this kind of opposition to a medical procedure you had firmly decided was best for your child? What would you do if you were in Stacy's position?

  5. Stacy and Steve decide that the 90 percent chance of a permanent cure for Katie is worth the risk of a bone marrow transplant, even though they are aware of stories like that of the Zangrandos, whose son died of complications from his transplant (pp. 75-80). With conflicting advice from doctors and other parents, do you think they made the right choice to perform the surgery on four-year-old Katie? Should Katie, now or in the future, have a say in what happens? What about Christopher?

  6. The Trebings are told that a human leukocyte antigens (HLA) match sibling is the only chance for a cure for Katie. If using PGD to conceive a "savior sibling" is ethical in certain last-resort cases, is it still ethical when other treatments are available? If using PGD to create a "savior sibling" is not the only option, do parents have a responsibility to exhaust other options first?

  7. The Trebings conceived Christopher believing that a transplant from his umbilical cord blood would be sufficient to save Katie. Later her doctor decided that using Christopher's bone marrow would improve Katie's chances of recovery, something the Trebings had wanted to avoid (p. 200). Do you think it was right to make Christopher undergo the potential pain and medical risk of surgery? Where should the line be drawn as to what can be expected of donor siblings?

  8. In the 2004 novel My Sister's Keeper, author Jodi Picoult tells the story of Anna, a PGD/IVF sibling conceived to save the life of her older sister, who suffers from leukemia. Anna undergoes repeated medical procedures for her sister's benefit, and ultimately decides to sue her parents for control of her own body when she is expected to donate a kidney. If you have read the novel, how do you feel it compares to the story portrayed in The Match? Do you feel that My Sister's Keeper is too extreme a case to shed light on the ethics of PGD, or do you think it raises relevant questions about PGD? Would such a scenario ever be possible or likely in the future?

  9. Stacy and Steve said they had always wanted to have a third child, even before Katie became ill (p. 22). However, Christopher was conceived especially for Katie's benefit. How might the parents' relationship with Christopher have been altered if his marrow had failed to save Katie?

  10. In chapter 4, we learn that the fertility practice Reproductive Specialists of New York do embryo biopsies for medical reasons only. But some laboratories in the United States have already started offering PGD for nonmedical reasons-for example, because the parents specifically want a boy or a girl (p. 27). Do you think it is wrong for parents to select embryos for nonmedical traits, such as gender, intelligence, or sexual orientation? What about the case Whitehouse mentions, of the deaf couple that attempted to select for a deaf child in the IVF process (pp. 139-40)? Where exactly would you draw the line between proper and improper uses of PGD?

  11. PGD allows parents whose offspring will be at high risk for certain genetic diseases to learn whether or not their embryos carry genetic mutations before the beginning of pregnancy, potentially saving them from having to choose an abortion (pp. 33-35). Dr. Hughes distinguishes between testing the embryos for specific diseases carried by the parents, a more urgent need, and testing for any and all diseases, saying PGD is a measure "for desperate couples" (p. 39). But should PGD be used in more cases, for instance, to prevent diseases doctors may not even be able to predict? If given the choice, do you think more parents would use PGD if they could ensure that they would have healthy children?

  12. Dr. Hughes first encounters the idea of using PGD to identify an HLA match as a suggestion from a desperate parent. Later, he wonders if he is crossing a line using PGD in this way (p. 40) but ultimately decides that the parents "have pruned this disease from their family tree forever and also have a baby that, when it's born, they have the cord blood and can give it to the child that's sick. I don't know what's right for the general population, but I knew what was right for them" (p. 42). Should the use of PGD be determined on a case-by-case basis? If so, who should determine whether it is ethical to use PGD?

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Further Reading

My Sister's Keeper. Jodi Picoult, 2004.

The Strongest Boy in the World: How Genetic Information Is Reshaping Our Lives. Philip R. Reilly, 2006.

Saving Henry. Laurie Strongin, 2010.

Everything Conceivable. Liza Mundy, 2007.

Making Babies: Personal IVF Stories. Theresa Miller, 2008.

"PGD: Fact vs. Fiction. Genesis Genetics Institute Sets the Record Straight about PGD and Its Uses in HLA Matching," Genesis Genetics Institute,'s_Keeper.pdf .

A statement from Dr. Hughes's Genesis Genetics Institute on PGD and literary license in the film My Sister's Keeper: "The Made-to-Order Savior" by Lisa Belkin, This 2001 New York Times Magazine piece is about two DBA families, the Nashes and the Strongin Goldbergs, who go through the process of PGD and HLA matching, with drastically different results.

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You might also be interested in:

The Match

ISBN: 978-080700121-9
Publication Date: 4/12/2011
Pages: 272
Size:6 x 9 Inches (US)
Price:  $16.00
Format: Paperback
Availability: In stock.