Saving Henry (26 page)

W
hen Allen and I chose to have Jack, and then Joe, we chose life. But Henry's death has left a hole in our lives where there was once a child, a hero, a sense of purpose, and a source of boundless hope. There is so much about Henry, his life, and our lives with him that is overwhelmingly beautiful, dear, and immortal. And yet there is so much that is heartbreaking and wrong. That every picture of Henry has been taken. Every word of his spoken. That I will never again hold his hand, read him a bedtime story, or kiss him good night. That he is not, after all, the boy who lived. These things, even given all the enduring love, are close to unbearable.

Henry walks beside me
The Strongin Goldberg Family

T
hree weeks later, mud from the cemetery still clung to my shoes. Dressed in black, it was hard to see the torn black ribbon on my suit, or the heart still drenched in sorrow that lay within. My nine attempts to use technologically advanced genetic testing to save my boy's life and its coverage in
The New York Times Magazine
and on
Nightline
had earned me the role of “Patient Represen
tative” at the Johns Hopkins Genetics & Public Policy Center's “Reproductive Genetics Policy: Framing the Issues” forum in Washington.

It was January 6, 2003. I sat on the dais, alongside several of the country's preeminent bioethicists and physicians, while my son Henry lay for the twenty-first day in his grave. But I tried not to think about that. Instead, I readied myself to speak for others who didn't have the opportunity to do so, to tell the seventy-five invited guests why it is so important for parents to be engaged in discussions like these, how thoughtful we are, how important this work is. I was prepared to say what I had to say and go home. I tried to convince myself that he would be there, just like he had been for seven years, six weeks, and five days.

I sat there while Dr. Mark Hughes explained the science of preimplantation genetic diagnosis. He talked about the promise of this reproductive genetics technology to save children like Henry while ensuring that any additional children would not be born with a disease that guaranteed a short and pain-filled life. He was bright and energetic, hopeful yet realistic. His devotion to saving lives was as transparent that day as it had been when we first talked six years earlier. As I listened, I readied myself to do PGD again. After all, it was the only hope for Henry. But then I remembered why I was there: to explain what would happen if irresponsible or uninformed policymakers and bioethicists turned back the hands of time and took this science away.

As I prepared to speak, Dr. Leon Kass, a prominent bioethicist who was the head of President Bush's Council on Bioethics, was at the podium expressing fears of things that doctors are not now, and may never be, capable of doing—and things that no reasonable parent would ever do. He talked, and has written plenty, about eugenics, slippery slopes, and spare parts. He warned of a Brave New
World. At first I wondered if he was right. Were people like us hopelessly compromised when it came to making decisions on behalf of our children and children-to-be? Did we need people like him to set the rules?

As he continued to talk in abstractions, I thought about my seven-year-old son whose body was already beginning to decompose. And I thought about Molly Nash, who was back in school, playing with her friends, going to rock concerts. I thought about the promise of science, the hope that PGD offered, and the passionate commitment of doctors like Mark Hughes, Arleen Auerbach, Zev Rosenwaks, and John Wagner. I thought about the year-and-a-half delay we suffered through while politicians attempted to destroy Dr. Hughes and, ultimately, Henry's life. I thought about the fact that if such politicians had their way, then every other family with genes that cause Fanconi anemia, Tay-Sachs, sickle cell anemia, cystic fibrosis, and other devastating childhood diseases would bury their small children. I wondered if these obstructionists would change their position if their own children or grandchildren ever faced this terrifying reality. I wondered if they would sit by as they delivered babies destined to die, if they would take leave from their jobs and visit them while they underwent brain surgery, liver surgery, open-heart surgery, and stem-cell transplants. I wondered if they would sit by their bedsides every day and night, watching them suffer and then fail, one organ system at a time, until they died. I wondered if they took the time to get to know any of the children and families whose futures they were threatening to destroy. Although Leon Kass never asked to, I was happy that on this day he would get to know me and my family.

Then it was my turn. I told Henry's story. I explained how we weren't looking to make Henry smarter, stronger, or more beautiful. We just wanted him to be able to be a kid and grow into a man.
PGD held the promise to make that happen. I explained that PGD isn't about creating unwanted children for their spare parts, but that it saves the new baby's life too, by showing doctors which embryos are healthy, without harm. I explained that PGD and stem-cell research aren't abstractions. They are real issues about real people. And they are the only hope for real kids like Henry. I told them what happens when PGD fails, and I introduced Sharon Harari, who told them what happens when it works.

 

T
he day after Henry died, I got a note from Sharon, which I still return to when I'm having a particularly challenging time understanding all that has happened to us. Her daughter Alma was born in January 2002, ten months before Henry died. By that time, Amitai was quite ill and needed the cord blood transplant right away. Alma was less than one month old when they did the transplant. The procedure went smoothly, and the week that Amitai went to school was the week that Henry died: “The night Henry died, I had this feeling just like I did on the millennium night. In my head I knew that after midnight our lives would continue just as they did, but my gut felt like the world might be coming to an end. If it weren't for Henry, we would have never met you. If it wasn't for you, we would have never made it through preimplantation genetic diagnosis. If it wasn't for PGD, we would have never had Alma. If it wasn't for Alma, Amitai would probably be dead today. We believe Henry saved our son's life.”

And just a couple of weeks after Henry died, Allen and I received this letter:

B
ehind every medical breakthrough are the pioneers who undergo risky, unproven treatments that fall short of their promise. It is through families like ours that doctors come to understand and perfect lifesaving treatments. Learning from our case, the doctors were able to improve the technology, and eventually science caught up with our dream. Just as research on others who came before us gave us hope for Henry, in a way we have paid our debt to them by giving others new hope.

Today, Jack is thirteen and Joe is eight. Jack has learned how to
do all the things we didn't have time for while we were moving from one hospital to another, like how to swim, ride a bike, and play baseball. Two years after Henry died, as a member of the Northwest Washington Little League Orioles team, Jack hit his first grand slam. As he lay under a pile of Little Leaguers, tears were running down my cheeks. At that moment, I knew that despite everything, he was going to be OK. Among Jack's closest friends are Henry's buddies Jake, Simon, and Ari. Every year, Jack and Ari arrange a superhero toy drive in memory of Henry.

When we deliver the toys to Georgetown for the patients and their siblings, Jack reminds me that he is a sibling too, and he takes one for himself.

Joe doesn't remember much of Henry, but he reminds me a lot of him. Like Henry, Joe shares a desire to be a professional baseball player. His out-of-the-park hits and the frequency with which he runs right out of his cleats have earned him the nickname Shoeless Joe. When Joe was three, nearly every evening as we lay in bed, he would ask if Henry could come over to our house and play. When I reminded him that Henry couldn't do that because he died, Joe would ask who Henry's mother and father were. It is hard for him to understand. Me too. Now Joe has decided that Henry is with Hank Greenberg, Babe Ruth, and Lou Gehrig. All things considered, that doesn't sound so bad.

 

A
llen started writing letters to Henry, which he posts on a blog, within days of Henry's death. For the first couple of years, Allen wrote nearly every day to let Henry know what we were up to or to tell him something interesting, or to remind him how much we all miss and love him. Here are some excerpts: