Saving Henry

by Laurie Strongin

  My fear over the loss of my hero has proved ill-founded, misguided, and flat wrong. Blinded by self-pity, I failed to recognize my sister’s heroism in the face of the worst imaginable adversity. Bogged down in the details of medical care, in the frustrations of being unable to help, of having no problems to solve, I failed to grasp the reality of the situation. On the day, as Laurie put it, that Henry made her a mother, the doctors pronounced not just a death sentence, but one of the worst magnitude: Your beautiful child will die, but we cannot tell you when or at what cost. I don’t know when Laurie fixed her course, but it’s never wavered: Laurie did everything possible, and tried some things that were not, to save Henry’s life. Through it all, though, she remained fixed on the other, equally weighty matter: Henry was sick, to be sure, but he was never a “sick child,” and Laurie was never the “mother of a sick child.”

  My memory of Henry is and will always be that of a boy, just a boy, who walked through life just like his mother and father. He’d walk into a room as if to say, “Here I am,” and the lights would go on. The party would start. The moths would gather. Henry was magical. He had the rare ability to put the trust in one of Laurie’s favorite expressions (does she remember?), “If you’re skating on thin ice, you might as well dance!” Henry’s ice was the thinnest imaginable, and how he did dance!

  Henry was, I know, the hero to Emma that Laurie was to me at a similar age. And he was a true hero, I know, because of the way that he lived his life and faced his own adversity and trials and tribulations. His feats of strength, courage, and bravery are legion. He won converts and attracted followers everywhere he went. If his parents and his doctors tried the impossible, it was only because Henry’s spirit and spunk made possible the impossible, and so required such attempts. What strength, I wonder, have others gained from Henry’s story? How many have attempted feats of seeming magic, only because they heard about Henry and thought, “If he can persevere, why not I?”

  When 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’s Favorite Things

  • Sidewalk chalk

  • The ice-cream man

  • Putting fish stickers on his IV bags so they look like fish tanks

  • When Max from Where the Wild Things Are says, “Let the wild rumpus start!”

  • Squirt-gun fights

  • Snowball fights

  • Jumping into piles of leaves

  19

  MY TURN

  Henry walks beside me

  The Strongin Goldberg Family

  Three 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 Representative” 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.

  The 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 midnigh
t 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:

  Dear Allen and Laurie,

  I don’t think you know me, but boy I sure know you and Henry. I have been struggling with the right time to write this letter. I am the father of Hunter Kelley. Hunter too has Fanconi anemia. For a year and a half we searched for answers as to how to help Hunter. In 2001 we learned that PGD was now available to FAA patients. It was about this time my wife read your New York Times Magazine article. We immediately decided we had to give PGD a try. After four cycles and many ups and downs, we got pregnant.

  On Dec. 9th, Cooper Kelley was born. A perfect match for Hunter. On January 21, Hunter underwent a transplant at University of Minnesota. Today we are back in Birmingham and Hunter is outside shooting basketball.

  The reason for writing this letter is to thank you and especially thank Henry. You see, if we had never read that New York Times article, we would have never tried PGD. Your determination to succeed at PGD gave us inspiration. Henry did not die in vain. Henry is a pioneer who has and is saving lives every day. I can only imagine what it is like to lose a son. Hopefully you can find some comfort in knowing without a doubt you and your son helped save our son’s life.

  Randy Kelley

  Behind 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.

  Allen 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:

  Tuesday, January 7, 2003

  Dear Henry:

  Another person at the conference Mommy went to was a rabbi. His name is Gerald Wolpe. He told me that he said a mishaberach for you when you were sick. He heard about you when we did the bone marrow donor drives a few years ago. His son is a Rabbi too. His name is David Wolpe and he writes books. As it happens, Mom bought me one of his books called Making Loss Matter. It is really interesting and helpful. Here is something he wrote:

  “The times when we feel utterly defeated are the moments when we have the chance to see farther, to reach down deeper into ourselves, to acquire wisdom. It is the time to begin dreaming wise dreams.”

  In another part of the book, he writes: “Superheroes of children’s comic books are projections of the child’s imagining the power to change the world.”

  What that means, I think, is that you became Batman so that you could use your superpowers to make you not sick. It worked. When you were Batman, you weren’t sick. Mommy bought me a little Swiss Army knife, much smaller than your humongous one, that she had engraved to say, “Batman Forever.” It means a lot to me. I took your Swiss Army knife to this place that engraves things and I had them write on it “Jack—With Love, Henry.” I will give it to him, from you, when he turns 9 or 10 years old.

  One thing that I was thinking about the other day is how incredibly brave you always were when you went to have surgery. It was nothing to you, like you were being led away to get a haircut or something. But most kids and a lot of adults get really scared when they have to have surgery. And just because you did it so much didn’t mean that you had to be brave or act like it was no big deal. You would say goodbye to me and Mom just like you did when we took you to school the first day. There were no tears, no looking back. You never knew how brave you were. I did. Mom did.

  At the conference we said goodbye to Sharon, Mark, Arleen, and Zev. It was good to see them. Suzanne is going to come over soon to say hello. We gave her the blood pressure machine and we want to give her the new jog stroller for one of the kids at the clinic. I am sorry you never got to wheel around in that thing.

  I have to send your death certificate to Northwest Airlines to get a refund for the tickets you and I didn’t use. I remember the flight to Minnesota. You slept next to me stretched out across the seats. We sat in the back to be away from people. I was afraid someone would get you sick. You didn’t want to wear your mask because it was uncomfortable, so I said okay. I bought you all of those Star Wars activities books right before we left. You liked doing the word find puzzles. Do you remember the ones that I made for you on the computer with the names of all of your cousins hidden in it? That was fun. You were really good at that and hospital bingo. I am sorry I didn’t let you call in to tell your joke. The honest truth was that I didn’t understand it. But it made you laugh and that made me laugh and I should have had you call it in. Oh well.

  I am a little sleepy now and I think I’ll curl up and take a nap. We have your bears, the mommy and baby ones that we bought at Pottery Barn Kids, and your blanket and your Henry pillow on our bed. Mom and I each grab something to hold on to when we go to bed. I think I’ll hold the mommy bear. You know I wish I was holding you.

  I love you.

  Dad

  p.s. I just thought of two things that we found so funny over the years. You did a great job doing different voices—and you were never grumpy or boring.

  “You must be grumpy.”

  Snow White to Grumpy

  “Spongebob, can you keep it down, I’m trying to be boring.” Spongebob, imitating Squidward

  October 3, 2006

  Dear Henry,

  Okay, the weirdest thing happened on Yom Kippur. I dropped everyone off at Adas [our synagogue] and then parked down Porter Street right on the edge of Rock Creek Park. When we were walking back down the street after services, I explained to Jack that I really like that we go to synagogue in the city.

  One of my favorite things to do for the High Holidays is to crush acorns. Shoes with a hard heel (which I never really wear the rest of the year) are my weapon of choice for all of the acorns that fall out of oak trees that line the streets here in DC. I love stomping those suckers.

  When we got to the car, I opened up t
he door and Jack said there was a bird in the car. I looked and sure enough there was a little bird with a yellow belly and grey feathers on his wings. I opened the other door and the sun roof so he’d fly out. Instead of flying out, he flew from the back of the car straight into the inside of the windshield. He then positioned himself on the dashboard and closed his eyes. Everyone thought he was sleeping. It was way too fast for me. I thought that he was pretending to be asleep so we’d leave him alone.

  I asked Jack what kind of bird he was and of course Jack told me exactly what kind of bird he was. A finch. I had no clue. Thank god for Jack.

  I took an umbrella we had in the car and tried to nudge the finch out. He opened his eyes but had no interest in taking off. I softly prodded him a bit more but he wasn’t budging. Finally, I snaked the umbrella under him and he had no choice but to stand on the umbrella. I brought him out of the car and he just stood there on the umbrella with no intention of flying away. I brought him close so everyone could check him out. He was really beautiful. There was no sign that he was hurt or that his wings were injured.

  I gently stroked his feathers. Joe not-so-gently poked him. He stayed put.

  I said that I was sure the bird was you. Mom said that was doubtful ’cause she is sure you are a praying mantis. I wanted to take him home since he didn’t seem to want to be away from us. No one thought that was a good idea. I always think that when we have an interesting or close call with nature, you are somehow involved.

  Finally I placed him up on a stone wall away from the road. He stood there for a second and then flew up into a tree. It was the strangest thing.