Courtesy of Laurie Strongin & Allen Goldberg
Laurie Strongin experienced every mother’s worst nightmare—the death of her child. In 1995, her first son, Henry Strongin Goldberg was born with a fatal illness called Fanconi anemia, a rare, inherited blood disorder that eventually leads to bone marrow failure. Laurie and her husband Allen Goldberg did everything they could to save Henry. They wanted to conceive a child who was a bone-marrow match for Henry—which could save his life—but at the same time wanted to make sure they didn’t have another baby with Fanconi anemia. Laurie and Allen were the first in the world to use pre-implantation genetic diagnosis (PGD), a screening technique used to identify genetic defects in embryos before being implanted through in vitro fertilization. After 9 attempts—including the production of 198 eggs—Laurie was unable to have a successful pregnancy that would help Henry. Though Henry passed away, Laurie and Allen have two healthy boys.
Along the way, Laurie and Allen turned their own heartbreak into hope for other families. They became vocal advocates for stem-cell research and paved the way for other children with Fanconi anemia to live longer, even though Henry died in 2002 at age 7. Now, Strongin has chronicled what she lost—and gained—in Saving Henry. Part memoir, part love story, it’s an incredibly moving account of this family’s struggle to save their oldest son.
Q: You worked on this book for five years. Why was it so important to you to write it?
A: There were several reasons. I wanted our sons Jack and Joe [now 13 and 8] to understand how hard we fought to save their brother’s life, and I wanted to honor Henry’s legacy. I didn’t want to forget anything, either. I felt like I could keep Henry alive by writing this book; this was a way for me to continue spending time with him. Henry was so remarkable—he was naturally joyful, resilient, and courageous—and some extraordinary things happened because of him. So I kept thinking, “What else good might come from his life?” The medical debate rages on about stem cell research and pre-implantation genetic diagnosis, and Henry’s story really humanizes that conversation.
Q: Looking back, what helped you get through the incredibly difficult challenge of trying to save Henry?
A: One thing was to keep looking at what we could do to keep looking forward, to find medical interventions that offered hope and make use of them, but also to seize the moment. So I learned to love my children and be with them completely and not to worry so much about the things that didn’t matter. We still live that way. We really have perspective on life and how to seize the moment by having fun, whether that means having ice cream for dinner, waking up on a sunny day and driving to the beach, taking Jack to see a rock concert in New York City or Joe to multiple hockey games in a week. We don’t wait for the right time down the road to have a good time and build the memory. The gift of that diagnosis was a reminder that we’re all here but for the grace of God. All of our time here is fleeting so I’m really going to enjoy it while we’re here. One of the things that I’m most proud of was how we treated Henry as such a normal, healthy kid and he absorbed that.
Q: In the book, you describe how you and your husband had very different ways of coping with Henry’s illness. How did you bridge that gap and how did trying to save Henry affect your marriage?
A: The biggest difference was in how we talked about Henry’s health. Allen would fast-forward to a future where everything was okay; it was a beautiful mixture of denial and hope. I needed to ready myself for the possibilities and figure out how to increase the likelihood of a good outcome. It was really hard for us to talk and listen and respond to each other’s differences early on. We did a lot of work on that, first, on our own, then with a therapist. That early help was critical; our relationship became stronger for it.
Q: In the course of your journey to save Henry, you became a powerful advocate for stem-cell therapy. How did that come about?
A: It was difficult to listen to people criticize stem-cell research using abstractions. We almost felt a sense of responsibility for having access to new potential medical discoveries and one of our ways of giving back was to advocate for those who would come behind us. We felt so passionate that using PGD to screen out fatal diseases should be allowed and supported. I participated in my first bioethical forum on reproductive genetics three weeks after Henry’s death; it was energizing in a way.
Q: Tell me about the Hope for Henry Foundation, which you founded in 2003.
A: Hope for Henry’s goal is to bring smiles, laughs, and entertainment to kids who are in the hospital with cancer or life-threatening blood diseases. Because of their illnesses, these kids are isolated for long stretches of time. So Hope for Henry takes the joys of childhood to kids in the hospital. We throw big superhero parties, birthday parties, Halloween parties and summer carnivals. We give them iPods with music and movies, portable DVD players, digital cameras they can use and take home with them. This gives them welcomed distractions from painful procedures and long periods of isolation.
Q: Based on your experience, what advice would you give to other mothers whose children have life-threatening illnesses?
A: I’d say believe in possibility. That informed how I mothered Henry and how I’m mothering my kids now. I think parents who are hopeful tend to have children who are hopeful because kids really pick up on how you’re feeling. There’s so much to feel good about in the world even in the face of serious illness. It’s important not to forget that.
