Saving Henry is the eye-opening and inspiring story of how far a family will go to save the life of their child. Laurie Strongin's son Henry was born with a heart condition that was operable, but which proved to be a precursor for a rare, almost-always fatal illness: Fanconi anemia. Deciding to pursue every avenue that might provide a cure, Laurie and her husband signed on for a brand new procedure that combined in vitro fertilization with genetic testing to produce a baby without the disease, who could be a stem cell donor for Henry. As Laurie puts it: "I believe in love and science, nothing more and nothing less." Laurie and her husband endured nine failed courses of the procedure before giving up. But Saving Henry is also about hope. It is the story of Henry, the feisty little boy who loved Batman, Cal Ripken Jr., and root beer-flavored anesthesia, and who captivated everyone with his spunk and positive attitude. When the nurses came to take blood samples, Henry brandished his toy sword and said, "Bring it on!" When he lost his hair after a chemo treatment, he declared, "Hey, I look like Michael Jordan!" Laurie became a fervent advocate for stem cell research, working with policymakers and the scientific community to bring attention to Henry's case and to the groundbreaking research that could save many lives. Henry's courage and bravery inspired nurses, doctors, friends, and family. Saving Henry is the story of one family's search for a cure, and the long-lasting scientific impact their amazing little boy has had.
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About the Author
For 30 years, Laurie Strongin has helped draw attention and resources to issues of emerging national significance. In 1996, Laurie became drawn through personal experience into the frontlines of a breakthrough medical procedure that held the promise of saving her son, among countless other children. Turning her advocacy and media skills to that issue, Laurie participated in national medical policy panels (alongside Newt Gingrich and Dr. Bernadine Healy, among others); worked with then-House Democratic Leader Nancy Pelosi and Congresswoman Diana DeGette (D-CO) to urge Senate passage of the Stem Cell Research Enhancement Act; secured coverage of the issue on ABC's "Nightline" and in a Sunday New York Times magazine cover story; authored Vetoing Henry, a Washington Post op-ed criticizing President Bush's 2006 veto of federal funding for human embryonic stem cell research; and advocated for parental perspectives on NBC, the CBS Early Show, and MSNBC. In 2009, when President Obama lifted the ban on federal funding for stem cell research, Laurie was one of a few dozen honored guests. Laurie's subsequent memoir, Saving Henry, has been featured on Good Morning America, The Diane Rehm Show, The Bob Edwards Show, The Dr. Oz Show, and BBC; and featured in USA Today and The Washington Post. Since its publication, Laurie has headlined over 60 speaking engagements across the U.S. Laurie's leadership has been recognized by numerous institutions. She has received Children's National's Chairman's Award, Georgetown Pediatrics' Flame of Hope Award, Children's Charities Foundation's Star for Children Award and the Center for Nonprofit Advancement's 2016 EXCEL Award. Laurie was featured as a "Heroes Among Us" in People magazine in 2016. In addition, in 2015-2016, she served on the Institute of Medicine's Committee on the Ethical and Social Policy Considerations of Novel Techniques for Prevention of Maternal Transmission of Mitochondrial DNA Diseases. She serves on the board of directors of the National Marrow Donor Program, and on the Association of Child Life Professional's Advisory Council.
Read an Excerpt
Saving HenryA Mother's Journey
By Laurie Strongin
HYPERIONCopyright © 2010 Laurie Strongin
All right reserved.
Chapter OneTrue Love
The list of Henry's favorite things is lengthy and wide-ranging. Marbles, watches, and Tom and Jerry cartoons. Batman, Cal Ripken, and a Pokémon named Charizard. Skittles, chocolate croissants, and garlic bread. Having a lemonade stand, taking a bath by candlelight, and making telephone calls.
But at the top of the list of Henry's favorite things is a little girl who is as beautiful as her name: Bella.
As Henry got sicker and sicker year after year, his list of favorite things grew to include more unusual items: electric blankets, portable urinals, root-beer-flavored anesthesia.
Still, Bella Herold, the love of Henry's life, was always, without question, at the top of his list.
Henry met Bella in September 1998, on one of his first days as a member of the Sunflower class at a preschool in northwest Washington, DC. Bella was the teacher's helper, the teacher being her mother. By the time I arrived to pick him up, Henry was in love. At two and three respectively, Henry and Bella's dates were supervised. And there were lots of them. Sometimes she came over to our house to play soccer, or tag, or to go out for an ice-cream cone. Sometimes he went to her house for pizza or swimming, or to meet her new hamster. Each October, they celebrated their birthdays together. Henry gave her jewelry. Bella gave him Barman T-shirts.
"Mom, come see what we did!" Henry yelled one afternoon from the front porch where he and Bella were shooting stomp rockets into the street and over a neighbor's house. "We wrote our names, and Jack's, too!" To this day, the bricks on our front porch are covered with faded pink, blue, and yellow chalk advertising "Henry," "Jack," and "Bella," alongside hearts, stars, and a few simple math equations.
Henry spent a lot of time with Bella: her mom, Liane; and her sisters. One warm summer day in June of 2000, Bella invited Henry, then age four, to go swimming at the Inverness Recreation Club in her suburban Maryland neighborhood.
"See you later, alligator," I called out to Henry, as my husband, Allen, and I drove away.
"While, while, crocodile," he replied.
According to Bella's mom, Henry and the girls swam and played in the pool for a long time. When they were done, Henry jumped out of the pool and took off his wet bathing suit, leaving him naked, in close proximity to the girls and all the other swimmers and nonswimmers at the pool that afternoon.
"Mom," Bella whispered insistently, "Henry's naked. Get him to put his clothes on, or at least a towel."
Liane offered up both possibilities, to which Henry replied, "It's OK. I'm good."
When it came time to go back home for lunch, Henry walked with Bella and her family from the pool several blocks to their house, completely naked, without a care in the world, an expression of the self-confidence that would serve him well in the years to come. When I asked Henry what he liked most about Bella, he said, "Everything." From the sweet smile on her freckled face to her long straight brown hair that was often adorned with flower-covered headbands to her slightly shy and down-to-earth personality, she was more than just likable. So much so that Henry stopped saying that he was going to marry me. So much so that I didn't even mind. The only other girl who ever tempted Henry was Snow White, whom he spent a few days chasing around Walt Disney World. But even she, the Fairest of Them All, couldn't compete with Bella.
As Henry got older, and a little bit sicker, Bella-along with new movie releases, trips to the Pokémon Center in New York City, wax bottles from Candy Kitchen in Rehoboth Beach, Orioles games, and birthday parties-was a driving force behind his "Let's Just Do It!" attitude and his unwavering and continuously tested determination to get out of the hospital. When Bella called to invite Henry to her ballet recital in June 2002, nothing was going to stop him from being there.
Henry had recently graduated from kindergarten. Like many six-year-olds, his portfolio of artwork was filled with white paper covered with colorful Magic Marker print that read HENRYHENRYHENRYHENRYHENRYHENRY. His handwriting was beautiful, earning him a "P" from his teacher, for Proficient. He was great at drawing hearts and flowers, and I have stacks of notes advertising his love for me. My favorite is on a yellow-lined Post-it that has a picture of us and the words HENRY. I LOVE YOU MOMY. I WILL OOWET LOVE YOU. ("Oowet" is Henry for always.) Later, he made a poster publicizing his love for Bella. It's a beautiful picture of them, two stick figures with huge smiling faces, along with three words, all capitalized: HENRY. BELLA. BELOVE.
Henry and Bella were well into the fourth year of their courtship, and things were going strong. Henry's bedside table featured a picture of Henry in his number 23 Michael Jordan Chicago Bulls jersey, and Bella in a pretty blue dress with little white flowers. They had spent the afternoon playing soccer together in our backyard. At this moment in time, Henry is kissing Bella's cheek and she is smiling. Although you can't tell by looking at the picture, they are also holding hands. Bella, too, had a picture of the two of them in her room at home. When Bella sent Henry cards, for his birthday or to plead with him to Get Well Soon, she signed them "I [??] U, Bella"-which was all he needed to know.
Early one warm and sunny morning, I felt Henry's presence by my bed. When I opened my eyes, there he was. Sporting a yellow button-down shirt, blue blazer, and khaki pants, Henry was dressed and ready to go.
"Mom, get up," he was whispering. "We need to go see Bella. We need to go now. And don't forget what we talked about." The night before, Henry explained that we would need to leave a little early because he wanted to buy flowers for Bella to give to her after her dance recital. I looked at the clock: 6:32 a.m. We had three hours, twenty-eight minutes.
Henry picked out the most beautiful white roses he could find, and we arrived at the auditorium in plenty of time. Henry joined Bella's mother, sisters, and grandparents to watch her dance. I had left-it was a date, after all-but Bella's mom, or "Little L," as Henry affectionately called her, summed up Henry's expression as "mesmerized." I'm not sure if she was describing how he appeared during Bella's performance or afterward, when she shared the same seat with him for the remainder of the recital.
On October 25, 2002, Henry's seventh birthday, he and lack, his younger brother, were treated to a private performance at our home by a magician named Turley. Henry's white blood cells had failed him again, necessitating yet another prolonged period of isolation from friends, school, movie theaters, ice-cream parlors, amusement parks-just about everything and nearly everyone that made life worth living. Turley was able to draw laughter and awe from the boys, but despite being the master of making a triple-scoop ice-cream cone with jimmies from stale milk and ants, Henry knew that a birthday party with no friends isn't much of a party at all.
Later that evening, Henry whispered in my ear, "Mommy, it's my birthday and I really want to see Bella." He added, "Don't tell anyone. Definitely don't tell Dr. Wagner." Henry knew that I would understand that a date with Bella could more than turn the day around. I asked Allen to take Jack upstairs and get him ready for bed. Within minutes, Henry and I were in the car. Destination: Bella's house. I knew that the risks associated with seeing Bella were nothing compared to the rewards. If we snuck in a visit with Bella from time to time, Henry would keep fighting, and one day he would get better.
For hours, Henry and Bella sat on her couch and watched TV, played games, talked, and laughed. I took a few pictures for Henry to add to his collection and to record yet another chapter in the amazing love story of my spirited son and his sweet girlfriend.
Henry's Favorite Things Pokémon trading cards, especially those with 90 hit points or more Nicknames like Uncle Stinky, Nicky Picky, Ari-bo-bari, and Jackie-boy Riding around the neighborhood in his Radio Flyer wagon Peter Pan Batman Band-Aids Sea kayaking with Dad Blowing out candles
Chapter TwoBecoming Henry's Mom
This is a story about the power of love and the promise and limits of science. It is a story in which politics, ethics, and advances in reproductive genetics collide. It is a story of the group of physicians who took our family to the outer edge of science and into the whirlwind of national controversy. It is a story about a family's search for a miracle, and the children who lived to tell the story. Finally, it is a story of a remarkable little boy who taught me and countless others what is important and what just doesn't matter at all; who showed me how to live well and laugh hard even in the face of odds you'd have to be crazy-or full of hope-to bet on.
It was October 25, 1995, and we were in an operating room at George Washington University Hospital in Washington, DC: Allen and me; our obstetrician, Richard Beckerman; a neonatologist; several medical interns; and delivery-room nurses-a not-so-intimate group of ten or so. My relatively uneventful pregnancy had culminated with a diagnosis of intrauterine growth retardation (IUGR), meaning that my baby had stopped growing. I first learned about IUGR and its potential threat to my baby-mainly, low gestational weight-at my thirty-six-week checkup. For ten days I endured a series of fetal stress tests, all of which were normal. But because the baby was breech in addition to the IUGR, Dr. Beckerman decided to deliver by Cesarean section when I was thirty-seven and a half weeks pregnant. Although I was nervous, any concern about the baby's health was mitigated by normal blood tests and sonograms earlier in the pregnancy and the absence of any pregnancy-related complications.
That morning, numb from the chest down, I lay with a surgical sheet draped over me, preventing me from seeing a thing. Allen stood by my side and we waited for the moment when we could hold our first baby for the very first time. I had planned to give birth naturally, so lying there, unable to feel or see anything, was disconcerting.
"What's going on?" I asked Allen, who kept releasing my hand and drifting away to witness the wondrous moment when he would become a dad. "Is everything OK? Can you see anything? Is it a boy or a girl?" I wanted to be part of the action, which was ironic since at the moment, temporarily at least, I had the starring role. Even more important, I wanted the information that would allay any lingering concerns I had about the baby's health.
Finally, I heard a sweet little cry.
"It's a boy!" exclaimed Dr. Beckerman. "And he's peeing on me."
At five pounds, Henry Strongin Goldberg was a healthy size, considering the IUGR. I was immediately, and enormously, relieved. I had been worried that if he were only three or four pounds, he might have had to spend a few additional days in the hospital-a concern that, at the time, seemed devastating. As the nurses tended to Henry, the doctor told us that his Apgar scores-a commonly used evaluation of a newborn's physical condition immediately after delivery-were around nine. This was wonderful news, because a baby who scores a seven or higher on the Apgar test is generally considered in good health. But as one of the doctors presented Henry to Allen and me, clean and wrapped in a blanket, I noticed a tiny extra thumb on his right hand. I reached out for him, but the doctor, also having noticed the extra thumb, whisked Henry away to take a more thorough look.
I never even got to hold him.
The waiting room, meanwhile, was filled with our family: Allen's and my parents; my brother, Andrew; my brother-in-law, Andy; and my sister, Abby, who was, at that moment, nine months pregnant with her second child and experiencing early contractions. They sat and waited, watching television, sipping cold coffee, and playfully placing bets on the gender of our baby, all of which my father was recording on video to make certain he had evidence when the time came to pay up. My brother was sure it was a girl, the others said a boy, while Allen's morn, Phyllis, had the good sense to refrain from weighing in. The conversation was interrupted by the arrival of a nurse pushing a newborn baby down the hall in a plastic bassinet.
"Who do we have here?" asked my dad, leaning over to get a closer look at his new grandson. "Have you looked at him yet? I mean, he's got all the right number of appendages in the right places?" he teasingly asked the nurse, just as he had when my sister, brother, and I were born many years earlier.
"He does have an extra thumb," the nurse replied. "But apart from that, everything seems to be in the right place. Better to have more than less, I suppose." Without a pause, the conversation continued: how cute Henry was and who he looked like. No one seemed to realize that with that extra thumb would come a future that none of us had ever imagined.
"He's adorable, look at him!" exclaimed Abby.
"He's got Laurie's nose," added Andy.
Allen arrived, still wearing the scrubs he had donned in the surgical suite. After a round of hugs and handshakes, Allen looked around the room at the faces of his family. "Did you notice his finger?"
"What finger?" my dad asked. Like the others, he hadn't absorbed the nurse's news.
"Well, he's going to throw a mean fastball because he's got six fingers," Allen replied. Again, little reaction. None of us knew what an extra thumb could mean. Instead, everyone was moving to the window outside the nursery, where they crowded together to stare lovingly at Henry, lying in his bassinet in a diaper and a soft blue-and-pink striped hat.
I've watched the video of this scene so many times, I know it by heart. It's here when Henry's pediatrician appears in the hallway and shares the following news: "Henry's having a little bit of a problem with the lungs ... so we're going to close the curtains now." With that, the video abruptly goes dark.
While I was wheeled from the delivery room to another room upstairs, several new doctors were with my son, conducting a battery of tests, trying to assess his wellbeing. Allen took turns at each of our bedsides. I had given him a video camera as a "new-dad" gift a few days earlier and, with that in hand, he rushed back and forth, filming and then showing me video of our firstborn son. He had a head of lovely brown hair and perfectly pink skin. And he was strapped to an oxygen mask, encased in a bubble, in intensive care. That's how I first got to know Henry.
That afternoon, with my family around my bedside, close friends stopped by my room to congratulate me and meet the baby. Becca Knox and Erica Antonelli, my friends from high school were there; along with Val Syme, one of my closest college friends. The room was filling with flowers, which Allen kept putting in the bathroom because of his allergies, and the phone kept ringing. As much as I accepted people's good wishes and congratulations, I was increasingly filled with dread. I still hadn't met my son. I couldn't tell anyone what was wrong. I couldn't even answer the question of who he looked like. Finally, a doctor I hadn't met before walked into the room. He introduced himself, and upon hearing his title-Dr. Thomas Hougen, head of cardiology at nearby Children's National Medical Center-and registering the look on his face, Allen asked everyone to wait in the hallway. After closing the door, the doctor explained that Henry had a serious, but correctable, heart defect called tetralogy of Fallot.
Those three words meant nothing to me. As the doctor spoke, repeatedly mentioning Henry's heart, all I could think was that this man had to be in the wrong room, talking to the wrong mom, about the wrong baby. "This doesn't make any sense," I thought to myself. "It's just an extra thumb." It was as if I were an observer of my own life, like an actor in a bad made-for-TV movie. But Dr. Hougen kept saying the name Henry, and he kept talking as if he were saying something we needed to know. I looked over at Allen, at the concern creasing and folding the features of his face. I reached down and touched my deflated belly, swollen and pulsating with life just hours earlier. I fingered the thick bandages covering the sutures that held my abdomen together. With that, all the benefits of denial vanished.
Excerpted from Saving Henry by Laurie Strongin Copyright © 2010 by Laurie Strongin. Excerpted by permission.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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Table of Contents
Contents1. True Love....................1
2. Becoming Henry's Mom....................7
3. The Wonder Years....................18
4. Making Choices....................30
5. Hope Interrupted....................52
6. Take One....................70
7. Hope for Henry....................76
8. Dwelling in Possibility....................95
9. It's a Wrap....................112
11. Plan B....................135
12. Take Two....................144
13. Day 0....................152
14. A New Beginning....................161
15. Super Better....................186
17. A Moment in Time....................217
l9. My Turn....................256
What People are Saying About This
There's a reason Saving Henry rings with so much truth: the author lived every word of it. It's a vivid, beautifully rendered, and almost painfully honest account of a journey none of them wanted to take, but could not avoid, thanks to a bad throw of the genetic dice. Laurie, her husband Allen, and especially little Henry, become pioneers in a landscape of complex technological procedures that offer hope but also bring pain . . . and yet they keep trying. This is a tale of a family that will not quit. (John Donvan, correspondent, ABC News))
Saving Henry is a marvelously told tale of love triumphant. Parents often say they would do anything for their children. This is the story of a couple that actually did. (Jeffrey Goldberg, national correspondent, The Atlantic))
Henry's story is important and newsworthy; a testament to how the debate over medical technology and stem cell research is not just an academic argument, but also a searingly personal one. Mostly, though, it's an intimate love story. We should all learn from Henry what his family has learnedto live well and laugh hard. (Lisa Belkin, journalist, The New York Times))
Strongin has a gift for telling a complex medical story as an unfolding family narrativea family that in so many ways is my family, your family, anybody's family. Any of us in today's world could find ourselves facing the difficult and challenging set of decisions this family had to make. Strongin's story is a truthful and honest road map we may want to follow. (Dr. Ranit Mishori, contributing health editor, Parade Magazine; professor, Georgetown University School of Medicine))
How do you make beauty and meaning out of unimaginable sorrow? Saving Henry is a stirring account of struggle, love, and loss that manages to be both honest and inspiring. (Rabbi David Wolpe, author of Making Loss Matter and Why Faith Matters))