Saving Henry (6 page)

Testing for HLA—a trait that was critically important to the success of Henry's stem-cell transplant, but not to the survival of the potential child we were testing—was different. Applying PGD in this way was brand-new. It had not yet undergone extensive ethical review or gained the status of moral acceptability. Together with our doctors, we would have to set our own course through this medical frontier.

Years later, when news of the use of PGD for disease prevention and HLA typing first broke, it was often grouped with selection for parental preferences like family balancing to have a child of a specific sex, eye color, sports ability, or IQ and reduced to the politically charged term “designer baby.” I had a hard time understanding
why anyone would go through the physical pain and expense of PGD solely to produce a daughter to help complete the perfect family (mom, dad, son, daughter), or to have a child who could read by age three (not that it is even possible to test for that). Not all girls want to have tea parties, and even smart kids may not choose to fulfill their academic potential. Any parent who doesn't know that yet will learn it sooner or later. To us, selecting an embryo based on its HLA type did not belong in the same conversation. Our baby's HLA type was not a superficial desire, but a matter of life or death.

Others rightly raised objections to the use of a baby's organs as spare parts. Removing a young child's kidney or liver to aid a sibling is risky, disturbing, ethically questionable, and deserving of serious debate. But using a baby's umbilical cord blood—which was all we were going to do—is different. The blood residing in the umbilical cord, where the stem cells used for bone-marrow transplants are found, are typically thrown away as medical waste after delivery. Retrieving these cells causes no harm to the baby. Essentially, it is lifesaving recycling.

Although Allen and I gave these issues a lot of thought and discussed them at length with our doctors, it was an easy decision to move forward. As with most things in my life, my mom was the first one I called to share our intention to pursue PGD.

I explained the process, and our decision, telling her everything that I had been keeping to myself, and all the reasons that led me to know that this was the exact right thing to do. The procedure would allow us to wrest control of Henry's fate from his defective genetic code. We could have a child whom we would love unconditionally and who would not have Fanconi anemia. We believed that our child would gain satisfaction from the knowledge that he or she had saved a life—a status that is revered in our culture and in the Jewish faith. People have babies for all sorts of reasons, and for us, having a child who could live a long life as well as save another was
on the top of the list of good reasons. Leaving matters up to fate fell far short in our minds next to the promise of enlisting with a small group of brilliant and compassionate physicians as pioneers on the forefront of a revolutionary advance in reproductive genetics.

“You know I will support you in whatever you do,” my mom explained, predictably, when I finished speaking. “And I know you aren't asking our permission. You never did that much as a child, either,” she added, laughing softly. “But I speak for Dad, too, when I say that you have our blessing. We are behind you and will help in any way possible.” She hesitated and added, “I totally understand what you are doing because I would have done anything for you.”

Though Allen and I would have moved forward regardless of what others said, we greatly appreciated the support of our family and friends—which we received in every single case—because we understood that choosing to pursue PGD would put our family in the crosshairs of what was sure to be a national debate on reproductive health and bioethics. I expected that some people would accuse us of being irresponsible or unethical or even labeling us as murderers, since PGD involved creating and testing embryos, and selecting and implanting only those that met specific criteria. I also knew that there would be strangers—and friends—who would applaud us for being pioneers.

Even if I had known the extent to which I would have to balance feelings and opinions—my own and other people's—I would have proceeded. But I would also have been a lot more apprehensive than I felt at the moment. Instead, primarily I felt relieved—or, more accurately, elated—that there was something we could do to try to save Henry's life. The only way I could live with Henry's prognosis was to do whatever I could to change it, even something that seemed impossible. I knew that if Allen and I could find the right doctors with the right technology—which I believed we had—Henry would survive a previously unsurvivable disease. All of these things created
a great and necessary distraction from the unthinkable possibility that he could die.

 

I
couldn't sleep. I was three months pregnant and waiting for the test results that would reveal if the child I was carrying had Fanconi anemia: if both of our children would die before they learned to read, climb a tree, or fall in love. We were expecting a call from Dr. Auerbach later that day. She had received the baby's amniotic fluid and had conducted the test. The results would be revealed that afternoon. I tried to stay upbeat, but I was overcome with dread. I was unwillingly living in a new universe, in which all the things I wanted to care about seemed trivial and stupid. Nothing was as I imagined it would be.

We got lucky.

 

D
r. Auerbach called to confirm that the baby I was carrying did not have Fanconi anemia. We also learned that our baby's HLA was as opposite to Henry's as it could possibly be, while retaining the same parents. I cried when I hung up. My tears were still flowing when I called Allen at work to share the great news. I was so overwhelmingly grateful that we were going to have a healthy baby. Before this phone call, and before Dr. Auerbach's news, I had been filled with so much self-doubt. As someone who had wanted to be a mom more than anything else, the idea that I might not have been able to give birth to a healthy child was devastating.

“How are you? How are you feeling?” Allen asked. I could hear the relief and happiness in his voice.

I sat down at the table. I was filled with such enormous relief and excitement: about the new baby, and that we had found PGD, and could save Henry. Allen shared all this with me, of course, and
we agreed that I would call our parents to tell them the wonderful news. As I picked up the phone to call my parents, I realized that Fanconi anemia—a disease I had never even heard of before—had, in that one moment nine months earlier, become my filter. Every experience of my life would be affected by the fact that Henry had it. Every ensuing pregnancy would be marred by the fact that the little baby in my belly could have it. Every job that Allen or I considered had to offer medical insurance without preexisting conditions, and with compassion and flexibility. Every relationship had to offer a quiet understanding of our travails, accompanied by the capacity to give without expecting much in return.

In what seemed like a flash, one year passed and on October 25, 1996, Henry celebrated his first birthday. It was a very happy occasion. On the day of his birthday, our family and friends arrived, bearing huge smiles, boxes with bows, and a lot of hope. Henry was a walking Gap ad, wearing tan overalls with a tan-and-blue-striped shirt, flashing that smile that dazzled. He clapped excitedly as each guest arrived and each time he tore the colorful wrapping paper off a new gift. Henry seemed especially happy when his cousin Rachel walked in, decked out in a blue gingham dress with a rounded collar and a big white bow in her hair (already showing signs of the fashion maven she would become). We perched Henry and Rachel on top of our dining-room table, and they proceeded to stick their fingers into the “Happy 1st Birthday Henry and Rachel” cake.

My friends Erica Antonelli and Debbie Blum—each on the verge of marriage and motherhood—stopped by with a present they had made: the front page of a newspaper called
The Henry Tribune
with headlines like:
OH HENRY! EVERYONE'S FAVORITE BABY TURNS ONE. BIRTHDAY BOY BANGS ON BONGOS AS WORLD AWAITS CAREER DECISION.
And my favorite:
MARRIED WITH CHILDREN: DC COUPLE BUCKS TREND.

In addition to Elmo and birthday songs, Allen and I had also
chosen to celebrate Henry's first birthday by launching Hope for Henry, a campaign to raise awareness and critical funds for Fanconi anemia research. We knew that saving Henry's life required a battle on two fronts. The first was to find and access the best medical care possible, which we were doing with the help of our doctors and the Fanconi Anemia Research Fund. The second was to raise as much money as we possibly could to fund medical research that would improve bone-marrow-transplant survival rates and reveal a cure.

It was a great day. Henry was healthy and adorable, and surrounded by people he loved. What would turn out to be his very best gift, however, the thing he loved more than anything else, came two months later. Jack Strongin Goldberg arrived on December 28, 1996, in the same hospital where I had been born. He made his entrance at 4:35 in the morning on a warm day after a long labor, near strangulation by his umbilical cord, and an emergency C-section with inadequate anesthesia. The trauma that immediately preceded Jack's birth was erased by the sound of his hearty cry and the fact that he had ten fingers and toes, a healthy heart, and other signs of longed-for newborn normalcy.

A few hours after Jack was born, my mom brought Henry to the hospital to meet his new brother. From outside the plastic bassinet where Jack rested, Henry, age one, leaned in. “Hi Jack,” he said, trying out a new word he had learned earlier that day.

That night, as I nursed Jack to sleep, I couldn't stop looking at our new son, whose brown hair and eyes looked like mine, whose dimples came from Allen, and whose perfect health seemed like nothing short of a miracle.

Henry, my hero
The Strongin Goldberg Family

H
enry met his first hero in the aisles at Sullivan's Toy Store, near our home in downtown Washington. It was among his favorite places to go, especially when in search of something fun. On one particular afternoon, while on his way to the collection of bats, balls, Frisbees, and other flying objects that filled the store's back shelves and our backyard, Henry stopped dead in his tracks.

There he was.

His dark blue cape was spread out as if he were midflight. A mask covered his face, shrouding him in mystery. In the middle of his chest was a big black bat. We didn't even make it out of the store before Henry had freed Batman from his packaging. That night Henry slept with Batman in his clutches.

When it came time for Halloween that year, the black-and-white cow costume was last year's news. Henry was Batman. He was Batman the day after Halloween, and the day after the day after Halloween. He didn't need a holiday to give him permission to honor his hero. Henry quickly accumulated an amazing and diverse collection of Batman action figures that includes, but is not limited to: Code Buster Batman, Future Knight Batman, Gotham Knight Batman, Laser Batman, Power Armor Batman, Rapid Switch Bruce Wayne, Air Attack Batman, Aero Strike Batman, Arctic Batman, Jungle Tracker Batman, Powerwing Batman, Gotham Defender Batman, Photon Armor Batman, Blast Cape Batman, and Fire-guard Batman. One time Henry lined all his Batman action figures up head to toe, beginning in our basement. They went all the way up two flights of stairs and into his bedroom, where they wound up in a big pile of awesomeness.

Henry thought it was really cool that Batman protected people from bad guys like Mr. Freeze, the Penguin, and Two-Face, and bad girls like Catwoman, Harley Quinn, and Poison Ivy. He was especially taken with Batman's amazingly equipped utility belt and cool transportation modes like the Batcycle, Batboat, and Batmobile. “Batman is the best Batman is the best Batman is the best,” Henry announced to anyone and everyone.

 

E
very hero needs a companion. Batman had Robin. The Lone Ranger had Tonto. Shrek had Donkey.

Henry had Jack.

While Jack couldn't help Henry defeat his enemy, Fanconi anemia, he could provide other critical functions expected of a sidekick. When we first brought Jack home from the hospital he was too little, of course, to provide much interaction, but Henry still loved to be near him. Sometimes Henry would tickle Jack's stomach or toes, and other times he would sit right next to him and play with his toys. There was clearly something about Jack that appealed to Henry.

By this time, Henry's heart problems were behind him, his extra thumb had been removed, and his medical care consisted of routine visits to the pediatrician and a few specialists. He handled each appointment as if it was just another part of his routine. He went, got poked with a needle, got a lollipop and a cool Batman Band-Aid, and then went to the park to run and play. At the time, you wouldn't have been able to pick Henry out of a group of kids playing in the park as the child suffering from a fatal disease, although it would be hard to miss the smiling kid in the Batman costume traversing the monkey bars. He most definitely did not think of himself as sick, and neither did we.

My second maternity leave was far less demanding and more peaceful than the first. I'd wake up with Jack, feed him and Henry, and then head out for a walk. It was an unseasonably warm winter that year, and with Jack in the baby carrier, I'd chase fourteen-month-old Henry around the park or play hide-and-seek with him. As Jack slept against my chest, I'd push Henry on the swings. Every month, I looked forward to a night out with the girls, when I'd go meet the Ladies of the Pines for white pizza and eggplant parmesan.

 

A
fter three months, I returned to work full-time, and we hired a nanny to watch over the boys. Over time, they spent their days
running around Guy Mason Playground, chasing each other and any other kid up for joining them. In the evenings, Allen and I would return from work and play with the boys, read to them, listen to music, and blow bubbles for them to pop in the bathtub. We reveled in the normalcy of life with two young children. Allen had just gotten a job with an Internet start-up firm based in Atlanta, so he spent a fair amount of time on the road, a sacrifice we were all willing to make in exchange for the financial return that would allow us to afford the medical care that awaited Henry.

Knowing that Henry's health would not always be as good as it was at this time led us to recognize the importance of living each day to its fullest. We believed that one Halloween costume was never enough and that, with its complement of calcium, ice cream was more than a suitable dinner. Over time we became masters of good living, which would later come in handy when there wasn't much to work with.

But we would do everything we could to delay that day's intrusive arrival.

 

F
rom the moment of Henry's diagnosis, Allen and I believed that if we made every call, pulled every string, acted as tireless advocates, and pushed our love and science to their outer limits, Henry would escape his fate. We placed our faith squarely in the promise of PGD.

Recognizing that this option was our best and perhaps only hope to save Henry's life, Allen and I had begun to prepare for our first attempt when I was still pregnant with Jack. We provided blood samples for DNA analysis and HLA typing, met with our doctors, and educated ourselves as best as we could on the process.

PGD begins with IVF, which would make getting pregnant a lot more complicated, painful, and impersonal than my two previous
pregnancies. The plan was that when Jack was a few months old, I would begin the IVF process with daily injections of a drug called Lupron to halt my natural egg production. Weeks later, when blood tests confirmed that the Lupron had taken effect, I would add an additional injection of hormones, for a period of six to eleven days, to stimulate superovulation and produce, we hoped, twenty or more eggs, rather than the one egg that I, and most women, typically produce each month. When the eggs reached the appropriate level of maturity, I would take a single injection of human chorionic gonadotropin (hCG) to trigger the final “ripening” of the eggs. Within the next thirty-six hours, before I began to ovulate on my own, my eggs would be retrieved through surgery and united with Allen's sperm. Three days later, one or two cells would be extracted from each fertilized embryo and sent to a lab to determine which embryos were both FA-free and an HLA match. Within two days, the doctors performing the testing would call the doctors in the IVF clinic and tell them which of the embryos to transfer to my uterus. After the procedure, I would take daily injections of progesterone until my pregnancy test. All told, this procedure would take about five weeks. Nine months later, the theory went, we would have a healthy baby—our third child—and be assured that Henry would have the life we meant to give him at birth.

It almost sounded too good to be true.

 

W
hen we began quietly pursuing PGD in 1996, it was neither on the national news nor featured in fertility clinic advertisements. At that point, it was somewhere between a distant hope and an extraordinary dream shared by a small group of doctors and families who believed in the promise of science.

I had no doubt that if my body would cooperate, our doctors would deliver a baby and give us our boy back. The team we had
assembled was comprised of the most brilliant and compassionate doctors, all experts in Fanconi anemia, reproductive health, molecular genetics, or bone-marrow transplantation. Each was a pioneer working at the most controversial edges of science. Each had taken on perplexing medical puzzles that eluded their colleagues and offered hope to patients where otherwise there was none. The challenges they sought placed them before desperate families trying to bring babies into the world or save the ones they had. While success would be a major medical breakthrough, even a miracle, failure would bring death and devastation.

Dr. Arleen Auerbach was, of course, part of the team, and so much more than that. Since we first met her when Henry was just a month old, she had felt familiar enough to be part of our family and has always treated us like we were part of hers. Like our mothers, she was in her sixties, and her children and grandchildren were her life's focus. She spoke directly and authoritatively, and immediately earned our trust and respect. She has provided us with information, access to the world's best doctors, and books for our kids. We supported her research and filled her photo albums and PowerPoint slides with Henry's smiling face. We shared dinners, heartache, and advice on computer software. Dr. Auerbach's office was covered with photos of kids like Henry who were, when it came to science, waiting for something to change. After spending dozens of years confirming death sentences, she saw the potential of PGD to eradicate Fanconi anemia. She encouraged two prominent colleagues of hers—Drs. Hughes and Rosenwaks—to expand the use of PGD beyond testing for the presence of disease by adding HLA typing. She was the one who suggested that they try first with Fanconi anemia, given the dire consequences associated with it. And it was she who identified us as one of only two families that met the stringent criteria that Dr. Hughes set forth for patients selected to serve as PGD pioneers.

Dr. Zev Rosenwaks is the director of the Center for Reproductive
Medicine and Infertility, the world-renowned infertility clinic at New York–Presbyterian Weill Cornell. He is one of the most, if not the most, respected fertility doctors in the world. With leading-man good looks that matched his celebrated reputation, Dr. Rosenwaks emanated confidence, and within minutes of meeting him we had no doubt that we were in the very best hands. He had been part of the team that produced the first test-tube baby, and he had worked on the first PGD case. In 1997, he and Dr. Hughes were able to successfully help a couple—both carriers of the recessive mutation for sickle cell disease—use IVF and PGD to achieve a pregnancy with an unaffected embryo. The couple delivered healthy twins at thirty-nine weeks' gestation and proved that PGD can be a powerful diagnostic tool for carrier couples who want a healthy child and want to avoid the difficult decision of whether to abort an affected fetus. Dr. Rosenwaks's success in helping women get pregnant through IVF has resulted in a celebrity following and a long waiting list.

Once our third baby was born and the umbilical cord blood was retrieved and properly prepared, Dr. John Wagner would perform Henry's stem-cell transplant in Minneapolis. Dr. Wagner is a young, earnest, hard-working, unassuming stem-cell-transplant superstar on the rise. He specializes in Fanconi transplants, which are among the most challenging. He has watched far too many young children die. PGD was the first scientific advancement in a long time that would make his heartbreaking job easier.

As far as we knew, there was not another doctor in the world better equipped and motivated to save Henry's life than Dr. Mark Hughes. In 1993, Dr. Hughes's research was named “one of the ten most significant developments/discoveries in all of science” that year by
Science
magazine. In 1994, he published a paper in the
New England Journal of Medicine
describing the first successful use of PGD for disease prevention. Dr. Hughes, along with colleagues in
London, had used PGD to ensure that a couple at risk of having a child with cystic fibrosis had a healthy baby instead. Dr. Hughes was among the group of nineteen leading bioethicists, sociologists, physicians, scientists, and public-policy professionals recruited by NIH to join the Human Embryo Research Panel, a federal advisory committee charged with creating guidelines for the government's support of embryo research.

Soon thereafter, NIH recruited Dr. Hughes from his lab at Baylor College of Medicine in Houston, Texas. NIH's National Center for Human Genome Research funded Dr. Hughes's work through a government contract with Georgetown University, where he would continue to develop methods for extracting DNA from single cells for genetic diagnosis.

In September 1994, the Human Embryo Research Panel recommended that embryo research be funded by the federal government. The panel found that the “promise of human benefit from research is significant, carrying great potential benefit to infertile couples, families with genetic conditions, and individuals and families in need of effective therapies for a variety of diseases.” The NIH Director's Advisory Committee reviewed and approved the panel's report, and President Clinton approved it in December 1994, with the exception of a controversial area of research that involved the creation of human embryos for research. The approved guidelines explicitly supported Dr. Hughes's work on PGD.

Against the recommendations of the medical and bioethics experts on the Human Embryo Research Panel, and to the heartache of families like us, who looked to this science to save our children, in 1995, Congress passed an appropriations bill that overrode the NIH guidelines and completely banned the use of federal funds for research that destroys or seriously endangers human embryos. This provision, known as the Dickey Amendment (after its original
author, former Rep. Jay Dickey of Arkansas), seriously hampered Dr. Hughes's work, significantly delayed research advances, and probably ruined a lot of sick children's chances for survival.

The federal ban disallowed Dr. Hughes from performing his work on PGD as part of his position at NIH. It disrupted the work of countless others as well, forcing researchers to seek private funding or to give up their work entirely. Refusing to abandon his research or the families whose lives depended on it, Dr. Hughes had set up a lab as part of an IVF program at Suburban Hospital in Bethesda, Maryland, a private hospital across the street from NIH. There, with private funds, he continued his PGD work, primarily for couples anxious to screen out deadly genetic diseases.