the match The Match “Savior Siblings” and One Family’s Battle to Heal Their Daughter Beth Whitehouse beacon press boston Beacon Press 25 Beacon Street Boston, Massachusetts 02108-2892 www.beacon.org Beacon Press books are published under the auspices of the Unitarian Universalist Association of Congregations. © 2010 by Beth Whitehouse All rights reserved Printed in the United States of America 13 12 11 10 8 7 6 5 4 3 2 1 This book is printed on acid-free paper that meets the uncoated paper ANSI/ NISO specifications for permanence as revised in 1992. Text design by M. F. Rutherglen at Wilsted & Taylor Publishing Services Portions of this book are based upon a series of articles by Beth Whitehouse, which appeared in Newsday in 2007. The author gratefully acknowledges permission from Newsday to reprint those sections. The excerpt from the essay “Life Saver,” from Teen Vogue, appeared in the February 2009 issue. It is reprinted here with permission. Copyright © 2009 Condé Nast Publications. All rights reserved. Library of Congress Cataloging-in-Publication Data Whitehouse, Beth. The match : “savior siblings” and one family’s battle to heal their daughter / Beth Whitehouse. p. cm. ISBN 978-0-8070-7286-8 (hardcover : alk. paper) 1. Trebing, Katie—Health. 2. Anemia in children—Patients—New York (State)—New York—Biography. 3. Bone marrow—Transplantation—Patients—New York (State)— New York—Biography. 4. Pure red cell aplasia—Patients—New York (State)—New York—Biography. 5. Fertilization in vitro, human. 6. Procurement of organs, tissues, etc. I. Title. RJ416.A6T74 2010 362.198'921520092—dc22 2009035949 For my grandmother Bobbie, who always wanted me to write a book; For Sandra and Don Whitehouse, my mom and dad, who gave me the nature and nurture to be able to do so; And for my son, Tristan, who made me understand why parents would do anything to help their children contents prelude ix 1 “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 prelude may 24, 2006 Stacy Trebing yanked off the yellow paper hospital gown that cov- ered her shorts and T-shirt, unhooked the surgical mask from be- hind her ears, and stuffed both items into the garbage pail in the entryway of her daughter’s hospital room. She’d been at her three- year-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 ge- netically 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. ix