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

by Beth Whitehouse

Overview

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.

Product Details

ISBN-13:	9780807001219
Publisher:	Beacon Press
Publication date:	03/08/2011
Pages:	255
Product dimensions:	5.70(w) x 8.60(h) x 0.80(d)

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. 

Read an Excerpt

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?

Table of Contents

Prelude ix

I "Mind If I Take One Last Ski Run?" 1

2 "What Do You Think It Is?" 8

3 "Never in a Million Years" 18

4 "This Is a Beautiful Embryo" 24

5 "For Them, the Dice Are a Bit Loaded" 31

6 "This Is for Desperate Couples" 38

7 "We Have Incomplete Information" 47

8 "I Could Never Do That" 60

9 "Why Me? Why This?" 70

10 "I Wish We Hadn't Done It" 75

11 "The Easter Bunny Would Be Jealous" 81

12 "Come On, Baby" 88

13 "Take an Additional Folic Acid, in Case It's Twins" 94

14 "Things Look Really Good" 102

15 "So Much of Who We Are Happens at the Beginning" 112

16 "It's Hard to Tell Parents, 'Don't Do This'" 121

17 "There's No Black-and-White Answer" 130

18 "We're Not Going to Stop the Future" 138

19 "It's a Boy!" 149

20 "I Like This Place a Lot" 156

21 "Now It's Crunch Time" 162

22 "You Conceived Your Son for This?" 169

23 "Will I Get Handcuffed with My Kids?" 178

24 "This Is Mind-Boggling" 184

25 "Being a Mom Is the Coolest Gift" 191

26 "It's Now or Never" 200

27 "Bubba's My Brother" 205

28 "Good Luck" 218

29 "Her Body Is Healing" 224

30 "Why Are You Taking the Lights Down?" 231

31 "Back Up and Bling-Bling" 238

32 "It Goes So Fast" 245

Editorial Reviews

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

From the Publisher

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.)

Publishers Weekly