Saving Henry (19 page)

Henry and Jack were excited to see everyone, but I could tell that it was overwhelming even for them. Henry was weak and tired, and while all he wanted to do, I'm sure, was run outside and hug everyone hello, he couldn't. At that point he was taking sixteen doses of medication each day and was on a nutrition pump around the clock. We were up all night and spent our days working hard to help Jack reenter his world.

I had no time to untangle it all.

Henry takes it to new heights
The Strongin Goldberg Family

D
uring the fall of 2000 as Henry continued his bone-marrow-transplant recovery, he and Jack developed an assessment scale of Henry's health status that ranged from “Not Good” to “Super Better.” Every day, Henry worked toward Super Better. Thankfully, he was willing to suffer through plenty of Not Good days, recognizing them as a necessary means to an end. He stayed focused on the end
game of Super Better, settling for moments or hours of great times here and there, as he worked hard for it to become his way of life.

Two days after we arrived home from Minneapolis, Henry celebrated his fifth birthday. Allen, Jack, Henry, and I wore Batman party hats, ate cake, and broke open a Batman piñata alone in our house—with no one but ourselves to gather all the candy and prizes—as Henry's cousins and friends delivered presents to our front porch and sang “Happy Birthday” in exchange for slices of cake through a barely opened window. Within days, Henry got a fever and was hospitalized at nearby Georgetown Hospital. He got better, and then a few days later he got sick again. So we dumped some stuff into a duffel bag and headed up 95 North, so frazzled that we forgot basics like our driver's licenses and the kids' shoes, and drove to Hackensack, where Henry's longtime hematologist, Dr. Gillio, worked. We never even got a chance to restart the newspaper delivery.

We lived moment to moment, hour to hour, day to day—but never longer than that, in fear of what would happen next. As Henry continued to “recover” from the transplant, we'd spend days, weeks, and months at Georgetown University Hospital in Washington; Johns Hopkins Hospital in Baltimore; Hackensack University Medical Center in New Jersey; and back at the University of Minnesota Children's Hospital, where Henry's doctors tried to unlock the mystery behind his seemingly unending string of complications. His chronic diarrhea; red, peeling skin; low blood counts; and fevers were either a sign of graft versus host disease, infection, or an adverse reaction to one of his many medications. All were a sign of the high-stakes war Henry's body was waging against a recognized foe, Fanconi anemia. Each diagnosis had different, conflicting treatments. A mistaken diagnosis could have fatal consequences. If Henry had graft versus host disease (GVHD), he would
require steroids to stifle the donor's cells' attack on his body. But the steroids would make Henry more vulnerable to infection. If he had GVHD and it went untreated, it could escalate from a daily nuisance to a killer. If the cause of Henry's complications was infection and Henry was put on steroids, the infection would worsen and possibly kill him. Until the doctors could find proof that Henry had GVHD, it was too risky to treat him for it. Dozens of skin, gut, and liver biopsies requiring anesthesia, stitches, and hospitalizations failed to offer definitive proof. Because prior to Henry's transplant most children either died by this point or lived better than Henry, our doctors had little experience to draw on.

Chaos reigned as we attempted to straddle our yearning for a normal life (whatever that is) with the reality that the only truly predictable things were fear and loss. In spite of that, we did our very best to savor each day. If anyone had ever told me how hard it would be, or how much pain and suffering my kid would experience, I don't know if I would have had the courage to go through with it. But at this point, there was no turning back. We didn't feel sorry for ourselves or even waste much energy wishing things were different. We just did what we had to do.

 

I
n the fall of 2000, I was extremely honored to receive an invitation from Dr. Wagner and his colleague Dr. Jeffrey Kahn, director of the University of Minnesota's Center for Bioethics, to serve as a participant on the University of Minnesota's Working Group on Ethical and Social Issues in Preimplantation Genetic Diagnosis and Hematopoietic Cell Transplantation. In advance of the first meeting, I shared my written account of my experience with PGD with the scientists, ethicists, and legal experts who were charged with debating and proposing guidelines to inform the practice of using PGD to create a child intended to serve as a stem cell donor
for another. But transplant-related complications landed Henry in the hospital in Hackensack just prior to the meeting. Allen and I decided that I would stay with Henry and Jack, and Allen would go to Minneapolis as my replacement.

On his way to Minnesota, Allen read my PGD journal for the first time. He knew that I had been documenting our experience, but had yet to read it. As much as he had remained hopeful and optimistic throughout the process, I knew that deep down, of course, he was in tremendous pain. He was in pain because of what he had to watch me put my body through for three years as we tried to get pregnant through PGD. Because he saw the physical and emotional toll every shot, surgery, and disappointment had on me. Because he couldn't be the one to make a physical sacrifice to save Henry. Because he couldn't more easily protect his family and save our son. He was an amazing partner to me and beyond a wonderful father to Henry and Jack, but there was only so much he could take. I noticed how he stopped seeing friends during this time, and how those closest to him often took me aside to ask, “Are you sure he's OK?” I saw how he cringed every time the phone rang, afraid that it would deliver terrible news.

After Allen read my journal during that trip to Minneapolis, he believed that we had an obligation to share our experience as the voice of parents who had responsibly used the technology to try to save a life. Despite our lack of success, we still believed wholly in the promise of PGD. We were certain that the more mainstream PGD became, the more people would misguidedly request its use not only to save lives, but to fill specific cosmetic desires like hair color, eye color, or gender selection. We wanted to speak out, to draw a line in the sand, separate PGD's productive use from the abuse that would threaten to wipe it away. In addition, we both wanted to make the path easier for families who followed behind us, to take away some of the fear and mystery.

Without even mentioning it to me, he sent a copy of my journal to the editor of the
New York Times Magazine.
My journal was the basis of a cover story on July 1, 2001, that Lisa Belkin deftly wrote about Molly Nash and Henry, the promise of PGD, and the consequences of its failure. In the accompanying photos, a healthy Molly was performing ballet, while Henry, in his ubiquitous Batman T-shirt, defiantly bared his transplant-related battle wounds. The
Times
article led to an ABC News
Nightline
feature on February 8, 2002, on our family's journey to the outer limits of science. When these pieces ran, it was clear that Molly was faring far better than Henry and that Henry's fate was still undecided.

When the
Times
piece ran, Henry was still hospitalized at Hackensack. That morning, we bought several copies at the hospital gift shop so each of us could simultaneously read the piece and be prepared for a live chat that day on the
Times
's website. Allen and I agreed that the piece accurately reflected our experience and represented our family well. One of the reasons we had agreed to be featured in the story was our desire to positively influence the stem-cell debate. We hoped that greater understanding of what was at stake for kids like Henry would encourage the political community to change course and devote significant public resources to support research into potentially lifesaving technologies like PGD. Another reason was to increase knowledge about Fanconi anemia and the importance and availability of prenatal genetic testing and preimplantation genetic diagnosis.

The reaction to the piece was mostly positive. I recall only one chat participant raising the idea that perhaps we should have just let Henry and Molly die. I was one part horrified and the other part shocked that anyone would decline to pursue lifesaving treatment for an innocent child. I don't know if the commenter was influenced by religious beliefs or medical resource allocation concerns or a sense that only the fittest should survive, but I was disgusted,
and I pitied the writer and his or her children, if God forbid, there were any.

The producers at
Nightline
were kind enough to share the written reactions to the piece with us. Without exception, the listeners commended us for our courage and supported our efforts to do anything to save Henry. “They should be able to do anything and everything in their power to make Henry well,” one commenter wrote. Another kindly inquired if he could donate bone marrow to help Henry. One sent a Valentine's Day card to Henry along with one to Allen and me saying, “I commend you!! Henry is very lucky to have you for his parents. Being a parent myself, I would do anything to save my child.” The conservative journalists and think-tank thinkers who had called the Nashes murderers of innocent babies a year earlier were silent.

The overwhelming support paired with the lack of biting criticism put to rest any of my residual concerns about our being branded as reckless parents playing God and indulging in the creation of designer babies. Not only was my worry that protestors would descend upon our home and endanger our lives unfounded, but going public did substantial good. One family wrote to us to thank us for sharing our story as they recognized in Henry's and Molly's faces the facial features of their own child. The mystery of the puzzling set of seemingly unrelated medical issues that afflicted their child was solved through a blood test that revealed Fanconi anemia. Preimplantation genetic diagnosis provided a pathway out of their despair.

While the world learned of the promise and limitations of PGD, we continued to travel from hospital to hospital, determined to create a positive—and, believe it or not, fun—environment for Henry and Jack. We played balloon ball with blown-up surgical gloves. We watched movies and television. We bought and set up fish tanks in our hotel rooms and filled them with fish with names like One, Two, Red, and Blue. We knew where the best vending machines were in
each hospital, where the blanket warmers were, and which showers had the best water pressure. We knew where to take Jack for special outings. And because it so happened that
all
of Henry's hospital rooms were equipped with a Magic Closet, we knew where to get gifts to restock it. Georgetown and Hopkins were near enough to our home that family and friends could easily visit, Jack could go to school, and we could begin to get used to being home. Often, though, only to leave again.

Throughout all of this, Henry still never thought of himself as sick. He was always getting better. If we had time to sit back and take stock of the situation, we may have questioned Henry's reasoning, or even lost our determination to keep fighting. Taken one at a time, each decision we made seemed simple. Henry got a fever, so we would take him to the hospital and put him on antibiotics. Henry couldn't eat, so we inserted a feeding tube. The doctors needed to do yet another surgical procedure to search for a clue to the mystery of Henry's continuing problems, so we allowed them to, hoping we would find an answer with a clear solution and a path to recovery.

We had to do these things to get to Super Better.

 

D
uring those years, Allen and I never let go of our dream of having another child. But the fact that we rarely slept in the same room—one of us was at the hospital with Henry, and the other was home or in a hotel or apartment with Jack—made it difficult to do so. That is, until we found ourselves in the midst of a several-months' stay at Hackensack while some of Henry's specialists sought to solve the mystery of his constant diarrhea and unstable platelets. Allen and I figured that our long-term stay in Hackensack had an upside. We could use our frozen embryos that had been in storage for several years at Cornell Hospital to have a baby. I called Dr. Rosenwaks's office and made plans to implant a frozen embryo that
had been tested and diagnosed as Fanconi-free. Each morning for ten days or so, I would take my Lupron injections and travel into New York City at six a.m. for blood tests in preparation for a frozen embryo transfer.

This time around, I wasn't alone.

One year earlier, while we were in New York for my ninth PGD attempt, Allen and I had met, through Dr. Auerbach, Sharon Harari and Yavin Atzmon. They were visiting from Israel with their son Amitai, who, at one and a half years old, had recently been diagnosed with Fanconi anemia. Desperate for information about this rare disease that they knew nothing about, they had come to meet Dr. Auerbach and discuss their options. Many children with Fanconi anemia resemble one another; they have small eyes and are short in stature. When I first met Amitai, I was stunned by how much he resembled Henry. In fact, their whole family immediately felt familiar to Allen and me. Sharon was kind and funny, with fair skin and big curious eyes. Yavin was, like his wife, down to earth and direct. As we sat and talked for a long time about what we had been through—our hopes as well as our disappointments—I felt as if I were looking into the face of the woman I had been three years earlier. Where our eyes had grown tired and fearful, theirs were still energized and hopeful.
Maybe they'll be the ones to benefit from all our hard work,
I thought.

Since that first meeting, Sharon and I had become close. They had returned to Israel, eager to pursue PGD, and we'd spent many hours e-mailing back and forth, having our honest, no-holds-barred “Girl Talks.” After our ninth attempt had failed, she was the one I had told right after my family. That's probably because she was the one—the only one, really—with whom I didn't have to explain much, or hide my fears, because she, more than anyone, knew exactly what was at stake. And she was the one to whom, the night of Henry's superhero celebration, I had said what I'd been afraid to
say out loud to anyone else, even Allen: “I am afraid that this might truly be a farewell party.”