Saving Henry: A Mother's Journey

By Laurie Strongin

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."

More than anything, Saving Henry is a love story. It chronicles a mother's love for her child, and a community's love for a family. Henry's life provides the inspiration for a national non-profit organization that is leading the way on patient engagement and reinventing the pediatric patient experience.

• Language: English
• Publisher: BookBaby
• Release date: Jun 22, 2018
• ISBN: 9781543939262

Book preview

Epilogue

His girlfriend Bella

Catching fireflies

Collecting shells

Bathing by candlelight

Wearing (and eating) candy necklaces

Fireworks

M&M’s (plain, not peanut)

TRUE LOVE

Henry and Bella share a quiet moment on a warm summer evening

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 Batman 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 non-swimmers 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.

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 Jack, 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.

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

BECOMING HENRY’S MOM

Holding Henry close to my heart

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 check-up. For ten days I endured a series of fetal stress tests, all of which were normal. But because the baby was breach 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 that 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 mom, 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 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 blueand-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.

Dr. Hougen, a softspoken and kind man, gently and carefully explained that our son, barely six hours old, had four different heart problems. The first was ventricular septal defect, which was a hole between the two bottom chambers, or ventricles, of the heart. The second was pulmonary stenosis, or an obstruction at or below the pulmonary valve. Also, the aorta (the major artery from the heart to the body) lay directly over the ventricular septal defect, and the right ventricle was more muscular than normal. I tried to listen carefully as he explained everything, but as someone whose last hospitalization had been on the day she was born, I just could not make sense of what he was talking about. It was like he was an adult in a Peanuts cartoon, emitting blah blah blah, speaking in a language I didn’t understand. When Dr. Hougen showed us pictures of a normal heart and a heart with tetralogy, I couldn’t even tell the difference.

In short, Henry was what is known as a blue baby. Because tetralogy of Fallot causes lower than normal levels of oxygen in the blood, it causes babies to turn blue. There was a good chance that Henry could have a blue episode in the next couple of days, weeks, or months. If he did, he would need emergency surgery to insert a shunt into his heart, which would provide adequate blood flow to his lungs as a temporary fix. And even if he didn’t have an episode, when he reached twelve pounds, he would still need to have the defects fixed through open-heart surgery. I listened, but I don’t think I heard anything beyond Henry and open-heart surgery. My body started shaking uncontrollably. I was desperate to hold this Henry he was talking about; scared that I would never have the opportunity.

Please, he said with a look of genuine tenderness, try not to worry. Henry is going to be OK. This is correctable. It has a ninety-nine percent success rate. And I know the perfect surgeon.

I wanted to trust him, to find some comfort in that number, ninety-nine percent but I was too busy fighting the terror escalating in me. As a first-time mother at thirty years old, I felt ill-equipped to care for a healthy baby, let alone one with a serious heart problem and an extra thumb. I didn’t even know how to change a diaper. With the help of friends, we had chosen a pediatrician, but we didn’t have a referral source for pediatric heart surgeons. Everyone we knew had healthy babies.

Dr. Hougen was barely out the door before Allen was right beside me. Laurie, he’s going to be OK, Allen said as he turned on the video camera to show me, once again, images of Henry taken in the nursery one hour earlier. Just look at our little guy. He’s so beautiful. He isn’t going to turn blue. And you heard Dr. Hougen. They can fix his heart. You can’t get much better than a ninety-nine percent success rate. He’s going to be OK.

How do you know?

I just do, he said confidently. This was the first test of a soon-to-be well-honed coping mechanism that was partly male and mostly Allen: an ability to fast forward past the terrible what-ifs and land squarely on top of the best-case scenario. He’s going to be OK. As our family and friends streamed slowly back into our room, a look of concern on their faces, I decided that I was going to believe Allen and those five little words. I was going to believe in them with everything I had.

My mom and dad stood at my shoulder, my mom’s hand on my hair. I looked up into their loving, worried faces.

What happened? my mom asked.

I practiced: He’s going to be OK.

Of course, I’d be lying if I said that my confidence lasted very long. That afternoon, my brain shuffled through everything I did while pregnant, searching for a reason this was happening; for the possibility that this was all somehow my fault. I ate well. I took all my vitamins. I got enough, but not too much, exercise. I avoided caffeine, alcohol, and secondhand smoke. I had done everything right. It just didn’t make sense. I couldn’t lie there anymore, driving myself crazy with these thoughts, missing out on the first hours of my son’s life: A boy I’d never met, and who I now missed so much it hurt. I had been instructed to stay in bed, given the stitches newly placed to hold my abdomen together, but I willed my body to sit up. I called the nurse, who joined Allen in slowly placing me in a wheelchair. A few minutes later, and sixteen hours after Henry was born, I got to hold my boy.

In a darkened room, well past midnight, in the neonatal nursery, Henry wrapped his tiny fingers around mine and latched his lips onto my breast. My milk began to flow through his body, and I felt a love that I never knew existed. It was quiet and peaceful and safe. There were no unfamiliar people, whispering unfamiliar words. Just a new mom, a new dad, and a beautiful newborn baby. I felt Allen’s arm around my shoulders and my son’s body in my arms; warm, lovely, and safe as I rocked him to sleep.

Two days later, Allen pulled our Isuzu up to the hospital entrance, where I was waiting in a wheelchair holding Henry. Allen tenderly put Henry into his new car seat and helped me into the seat in the back, next to Henry. The sun’s warm rays filtered into our car, and the natural light was uplifting. Allen drove below the speed limit, perhaps for the first time in his life, with his left hand on the wheel and his right reaching into the back seat, clutching mine. Ten minutes later, we were in the home we had bought especially for this occasion, just one month earlier.

I had barely slept since Henry’s birth. I was up all night feeding him, holding him, and obsessively watching for any