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Saturday, May 1, 2010

Healthy Attitudes

Below is a review of Saving Henry that appeared in The Jerusalem Post on April 23, 2010.
By AARON LEIBEL
23/04/2010 16:58

It’s 4 a.m. Eastern Standard Time or 11 a.m. Israeli time on this seemingly endless US Airways flight from Philadelphia to Tel Aviv. And I’m crying.

Saving Henry
By Laurie Strongin | Hyperion | 271 pages | $22.99



It’s 4 a.m. Eastern Standard Time or 11 a.m. Israeli time on this seemingly endless US Airways flight from Philadelphia to Tel Aviv.

And I’m crying.

I’ve just reached page 246 in Laurie Strongin’s Saving Henry: A Mother’s Journey, and her oldest son Henry Goldberg has just died.

It’s not as if the seven-year-old’s death came as a surprise – it was clear almost from the beginning of the book that the youngster’s chances of survival were slim – but I found Strongin’s matter-of-fact chronicling of her and her husband’s almost mythic struggle to save their child from the killer genetic disease Fanconi anemia moving in the extreme.

Or maybe my tears stem from the presence on the plane two seats away of Noam Mechtinger, my youngest grandchild, who is only somewhat younger than Henry when he died.

The feelings I often experience when reading a Holocaust memoir – how did the person manage to survive in the face of such extreme adversity and hardship and would I have had the inner strength to make it – play out here.

I can’t help but wonder if my wife and I would have possessed the same amazing fortitude, the singlemindedness to persevere in the struggle to save one of our own children that Laurie Strongin and Allen Goldberg displayed.

It’s not only that their oldest child’s illness consumed the lives of the Washington, DC, family with endless trips to hospitals and doctors’ offices in Washington, Baltimore, Minneapolis and Hackensack, New Jersey. Or that her husband decided to forgo the search for a new job after being laid off to be at his son’s side during his long ordeal.

Or that as a result of a new medical procedure, the couple tried nine times – in vain – to make an embryo, through in-vitro fertilization and genetic testing, that would produce a disease-free child whose stem cells could save Henry’s life. The anguish they suffered cannot be quantified, but the scope of their efforts to save their son can be appreciated in some of the numbers provided in the book. In four years of IVF, Strongin had 353 injections, produced 198 eggs but still did not get pregnant. They spent almost $135,000, most not covered by health insurance.

But they were not only driven by medical realities, but also by an obsession to provide their son with days of joy, perhaps to try to compensate him for his suffering (for example, he spent a whole year in isolation) or maybe because they feared his days would be few. As a result, Henry met president Bill Clinton, Baltimore Orioles star shortshop Cal Ripkin and the boy’s biggest hero, Batman (an actor at the Six Flags America theme part near their home). And the family spent many days on special trips to Disney World, other theme parks and toy stores.

In the end, the couple endured the unendurable. “We gave it all we had,” Strongin writes. “We worked with the world’s best doctors. We hoped. We were brave. We persevered. And despite all that it didn’t work.”

But because of their experience and the inspiration they provided to others, other parents tried the new medical procedures and their children lived. And in 2003, Strongin and Goldberg founded the Hope for Henry Foundation, which provides sick kids with fun and entertainment.

This book touches on the struggle in the US over stem cell research, but it is really about a mother and a father’s heroic efforts to save their child.

Although Strongin and Goldberg failed to save Henry, they took part in an experimental procedure that apparently has brought closer the day when fewer children will fall prey to this terrible disease.

Most important, in so doing, they fought the good fight. What more could any of us want inscribed on our tombstone?

The writer is arts editor at Washington Jewish Week.


Monday, April 19, 2010

USA Today’s Your Health: “Saving Henry” Talks About Siblings as Saviors

Below is the text of an article by Kim Painter that appears in the Life section in today’s USA Today.

In 1995, Laurie Strongin gave birth to her first son, Henry. In 2002, she said goodbye to him. Henry, a boy who loved Batman bandages and Pokémon trading cards, lost his battle with Fanconi anemia, a rare, usually fatal genetic disorder. He had not fought alone: On his side were parents willing to go to extraordinary lengths and doctors offering a new, controversial form of hope called preimplantation genetic diagnosis (PGD).

The idea was that the doctors could help the couple create embryos in a lab. Then they could test the embryos and find at least one free of Fanconi and with something extra: the right immune system traits to be a perfect stem cell donor for Henry. That embryo could then be implanted in Strongin’s womb — and be born as a “savior sibling” for Henry. It didn’t work. Despite nine tries, Strongin and her husband, Allen Goldberg, never had a child through PGD. But the family became part of the public debate over whether it is right to create, test and choose among embryos for any reason. Strongin lives in Washington, D.C., with her husband and two surviving sons. She spoke with me about her new book, Saving Henry.

Q: What’s the big misconception about PGD?

A: It’s a misunderstanding about what the baby is actually exposed to. In our case, the cells would have been taken from the baby’s umbilical cord, which is usually thrown away as medical waste. … People hear the word transplant and quickly jump to the thought that you are taking an organ.

Q: But PGD has been used in other ways, including sex selection. Some donor siblings have undergone bone marrow aspiration, not just cord blood donation. Where’s the line?

A: I think choosing a boy or girl just to balance a family is an abuse of this technology and actually threatens its availability for life-and-death purposes. … There have been cases where families collected the cord blood and for one reason or another were not able to use it, and they ended up with a difficult decision to make (to allow bone marrow donation). That is a decision to be taken very seriously and made with the advice of your doctors. … But donating a kidney? That’s something I would find problematic.

Q: At the time of Henry’s death, a couple of children with his disorder had been saved by siblings conceived through PGD. How many more have been rescued this way since?

A: For children with various disorders, it’s probably between 50 and 100. In the Fanconi community, maybe 10 to 15 families have used PGD to save the lives of their children.

Q: You’ve become an advocate for embryo and stem cell research. A year ago, President Obama lifted some restrictions on federal funding. What important obstacles remain?

A: The biggest obstacle is that medical discovery takes time.

Q: What advice do you have for parents of very sick children?

A: It’s so important to find whatever is enjoyable in each day and cling to that, to find the happiness.

Q: And for parents who have lost children?

A: My husband and I have decided to get out of bed every day and give our other two children, Jack and Joe, a wonderful life, while doing what we can to carry Henry with us.

Sunday, March 28, 2010

A Mother’s Story of Heartbreaking Loss Followed by Triumph: iVillage Interview

Below is an interview by Stacey Colino for iVillage. You can see it for yourself at http://www.ivillage.com/saving-henry-turning-mother-s-heartbreak-hope/125986

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 she and Allen eventually had two healthy boys after Henry’s death.

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.

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Thursday, March 25, 2010

Life in Henry’s wake: Laurie Strongin won’t let her son’s death be a total loss

Below is a beautiful piece that Washington Post Staff Writer Liza Mundy wrote about Saving Henry. I especially love the last line.

By Liza Mundy
Washington Post Staff Writer
Thursday, March 25, 2010; C01

Growing up in the D.C. suburbs in the 1970s, Laurie Strongin was an upbeat child and a model teenager. She did well in school, enjoyed a happy family, developed a durable group of friends. She also had a subversive — well, “streak” is the only word for it. After taking her SATs, Strongin and friends celebrated with a naked run along the Beltway.

A small moment, but telling: She had no way of knowing it then, but the character traits Laurie showed that afternoon — high spirits, an appetite for risk, an unusual willingness to make private matters public — would help sustain her in adulthood through the most difficult experience a parent can know.

In October 1995, Laurie and her husband, Allen Goldberg, became parents to a son, Henry. In addition to being adorable, their firstborn was afflicted with a disease called Fanconi anemia. Sometime in early childhood, Laurie and Allen were told, Henry would suffer bone marrow failure and die. They were offered a shard of hope for his survival: a genetic test that might enable them to conceive another child who could provide a life-saving bone marrow transplant.

Soon after hearing about this radical undertaking — sometimes called a “savior sibling” — Laurie and Allen were in. More than that, they were willing to talk about their efforts, to advance the debate about genetic testing and “designer babies.” Laurie has now enlarged the conversation with a memoir, “Saving Henry.”

“I’ve always been of the mind-set that we need to have a conversation about this — that government and bioethicists and parents and doctors need to actually be talking about what is acceptable and what is not,” says Laurie, curled on a couch in their Glover Park rowhouse.

Laurie — who dislikes the term “savior sibling,” which implies that a child is conceived for one purpose — began writing when she realized there was “no one to talk to” about their endeavor. The Internet was in its infancy then; there was little in the way of chat groups or informational Web pages. Writing would be a “gift to the next person.”

She also knew that if a genetically matched sibling was born for Henry, a huge controversy would erupt.

“I was,” she says now, wryly, “going to humanize the conversation.”

Signs of trouble

The atmosphere in the George Washington University Hospital operating room was relaxed on the morning Henry was born. The delivery was a routine C-section; Henry was breech, but aside from that and his being a bit on the small side, everything went smoothly. Presented with her newborn, however, Laurie noticed that he had a second thumb on his right hand. Well, not a thumb, exactly — more like an extra flap of skin. “It was just this little tiny — something almost like a claw, a lobster claw.” The mood in the room changed.

Before she had a chance to hold him, Henry was whisked away for scrutiny. A cardiologist told the stunned parents that Henry had a serious but correctable heart malformation called tetralogy of Fallot. Then, a geneticist explained that when an infant has several disparate problems — thumb, heart, weight — they could be part of a larger syndrome. There was a test he wanted to run for a genetic disorder.

“It’s so rare,” Laurie remembers him saying, “I’m not even going to trouble you with the name.”

A rare challenge

Laurie and Allen were resting in bed with Henry when they got the news. Laurie watched as Allen scribbled the unfamiliar name: Fanconi anemia. “It was like these two words wiped out — snap — everything that we ever expected in life,” she says.

Fanconi anemia is extremely rare, according to Arleen Auerbach, director of the program in human genetics and hematology at Rockefeller University and a renowned expert on the disease. It is a recessive disorder; Laurie and Allen, unknowingly, were carriers of type C. The adjective commonly attached to it, they soon found, was “fatal.”

Their only real hope was a bone marrow transplant, preferably from a healthy sibling who shared the same type of HLA, or human leukocyte antigen, as Henry. A transplant of umbilical-cord-blood stem cells from an HLA-matched sibling had an 85 percent chance of repairing Henry’s immune and blood production systems, while a transplant from an unrelated donor had, at that time, little chance of working. Either way, a transplant would likely be necessary before Henry was 5.

There were other odds to consider. Any future child of theirs had a 25 percent chance of being afflicted with Fanconi. Then again, the same child had about an 18 percent chance of being both healthy and a life-saving match for Henry.

After discussing the risks, Laurie and Allen agreed that they wanted more children. Returning from Boston, where they took a 5-month-old Henry for open-heart surgery, Laurie found out she was pregnant. The same day, she got a call from Auerbach, the Fanconi expert, asking, “What would you say if I told you you could knowingly get pregnant with a baby who is healthy and a perfect match for Henry?” Laurie laughed and said she was already pregnant. She would have the baby, and if he or she wasn’t a match, “put us on the list.”

Auerbach had been in consultation with Mark Hughes, a scientist who pioneered pre-implantation genetic diagnosis, or PGD, a field that developed in the wake of in vitro fertilization. During IVF treatments, sperm and egg are united in a lab to form a human embryo. In cases where would-be parents are carriers of serious genetic disease, Hughes developed the technique of analyzing the DNA of a cell tugged from an eight-cell embryo to identify embryos that were unaffected, so children could be born healthy. Hughes already had been approached by doctors, and parents, about testing an embryo for genetic compatibility with an existing sibling.

One of the people Hughes was talking to was Auerbach, who maintains a registry of children born with Fanconi anemia. Hughes, who like her had seriously explored the ethics, developed criteria for people he would be willing to work with. Among them: The couple must want to have more children, anyway. They had to be relatively young, because IVF works better for younger women.

Auerbach put Hughes in touch with Laurie and Allen. “They were intelligent and they were very determined,” Auerbach says. “You had to work with somebody special who would understand all the difficulties. . . . They knew it was a big risk. They persisted for so long. Other people might have given up.”

Science nonfiction

Laurie and Allen were optimistic; technology was rocketing ahead, and who knew what could happen in five years? In December 1996, their son Jack was born — Fanconi-free, but not an HLA match for Henry. They did preliminary testing in preparation for Hughes’s method. When Jack was just days old, she picked up the paper to see that a researcher had fallen victim to the nation’s confused embryo politics.

It was Mark Hughes. At the time, there was a ban on federal funding of research involving human embryos. Hughes, aware of this, was careful to keep his privately funded PGD lab separate from his other work for the National Institutes of Health and Georgetown University. But somehow, word got out that there might be a piece of federally funded equipment — a refrigerator, maybe — in the private lab. Hughes defended himself, pointing out, among other things, that he was working on DNA from cells, not on entire embryos. But the uproar led him to look for work elsewhere.

“He, in my experience, was so ethical,” says Laurie, still appalled. “He tried so hard and meticulously to keep those things separate. To me, it seemed so clear that this work was a passion — being able to save these children’s lives was what he was put on the planet to do.”

There was an excruciating wait while Hughes found another lab, in the Detroit area. The political entanglements lost the family almost a year, enough for several IVF attempts. Five years “was getting closer.”

As soon as possible, Laurie embarked on in vitro treatment at one of the world’s preeminent clinics, the Center for Reproductive Medicine at New York-Presbyterian Hospital/Weill Cornell Medical Center in Manhattan. During an early round of treatment, Hughes identified two embryos that were perfect HLA matches — but they had Fanconi. Other times, he identified healthy embryos that were HLA matches; the embryos were transferred, but no pregnancy. Another time, Laurie miscarried. The disappointments were inexpressible.

Meanwhile, Henry’s disease was progressing, and he went to hospitals around the country for observation and treatment. Yet their life did not seem grim. “It was just really, really fun to be with Henry,” Laurie says. “His spirit was so incredible, his sense of humor was so mature, and he and Jack were so close and so playful.” They went to Rehoboth Beach; acquired Batman action figures and superhero costumes. When Henry had an IV line inserted, he would brandish a play sword and cry, “Bring it on!”

In 2001, they were the subject of a New York Times Magazine profile, together with another couple, Lisa and Jack Nash, whose daughter Molly had Fanconi anemia. “Nightline” on ABC also featured their struggle. Reactions varied, Laurie says. Some people thought they were brave, others argued they were having a child for “spare parts.” Laurie and Allen were determined to show that parents who used this genetic testing weren’t trying to build a superior designer baby — as other critics argued — but protecting the health of their offspring.

In their willingness to weather criticism, they were uncommon. “Most families are not like that,” Hughes says. “Most of them are quite private and . . . kind of just say, ‘Look, just take care of us.’ “

‘The only real hope’

In the summer of 2000, tests had showed that Henry’s condition had worsened to the point where they had to try a bone marrow transplant from an unrelated donor. Around the same time, Lisa Nash, who had also used PGD, gave birth to a boy who was a perfect HLA match for Molly. A savior sibling had been born; just not theirs.

Laurie felt vindicated by the Nashes’ success. “It was so, so obvious that the only real hope was PGD,” she says. “I didn’t feel jealous. . . . I understood, and I think Allen felt the same way, that these pioneering developments — they don’t necessarily happen for the first people. They don’t usually happen for the first people. That’s part of the exchange. I mean, the exchange for not having to be the ones to wait, for being able to go [among the] first, was maybe that it wasn’t going to work for us.”

Henry lived another 2 1/2 years, enduring health crises but always bouncing back. “We never thought he was going to die,” Laurie says. By now, they had a third son, Joe, also conceived naturally. Henry, she says, “knew we wanted him to live. He had a lot to live for.”

But in late 2002, Henry started experiencing systemic failures. Allen began a blog to keep friends and family informed; Laurie includes some entries in the book. The posts in which Allen prepares for the death of his son are unbearable. His death was crushing, too, for the pioneering scientists who tried to save him. “It’s very difficult for me to read the book,” says Zev Rosenwaks, director of the New York clinic and a legend in the field of IVF. “It’s very emotional. We tried so hard.”

The yard at their home is so tidy, now, you would hardly know that two growing boys live there. The exception is the front porch. Scrawled on the brick facade are chalk marks that read “Bella” and “Jack” and “Henry.” They were scribbled by Henry and his childhood girlfriend. Thanks to the porch overhang, they have remained intact for a decade, testament to Henry and the mark he made.

He did make a mark. During treatment, Laurie met an Israeli couple who had a child with Fanconi; she urged them to try PGD, and it worked and saved their child. Other families followed suit.

In a narrow window

It should be obvious that Laurie and Allen are early adopters, willing to try the newest technologies. To distract Henry during treatment, they ordered an early portable DVD player. After Henry died, Laurie started a foundation, Hope for Henry, to provide DVD players, iPods and other electronic diversions for critically ill children.

The foundation also hosts parties in hospitals, to enliven the lot of children in long-term treatment. During a recent superhero party at Georgetown’s Lombardi Cancer Center, Wonder Woman and Superman were greeting children in the sunny foyer; there were face-paintings, capes, loot bags and lots of delighted recipients, some bald from treatment, at least one wheeling an IV bag.

Thinking about Henry’s birth, Laurie reflects on how many technologies were at their tipping point back in 1995: cellphones, the Internet, genetic testing. Henry had the fortune, and misfortune, to be born in the narrow window when many powerful 21st-century technologies were new but unreliable. Writing about Henry is her final effort to save him. To keep him — the memory of him — alive, and with him the prophetic significance of his life.

Saturday, March 6, 2010

Making My Debut

My friend and fellow B-CC high schooler Sarah Pekkanen is a gifted writer, a funny gal, and extremely generous with advice about the publishing world. Sarah has a group blog, The Debutante Ball, with four other first-time authors who have books coming out soon. Please be on the lookout for Sarah’s book, The Opposite of Me, which comes out Tuesday, March 9, 2010. Below is a guest blog I wrote today for The Debutante Ball about my path to publication.

The Debs are all excited to welcome debut author Laurie Strongin to the Ball today. Laurie’s memoir, Saving Henry, describes her family’s incredible fight for her son, Henry, who was born with a rare illness – and how, through it all, they learned to live every day with laughter and joy.  Here’s what Lisa Belkin, a New York Times reporter, had to say: “Henry’s story is important and newsworthy; a testament to how the debate over medical technology and stem cell research is not just an academic argument, but also a searingly personal one. Mostly, though, it’s an intimate love story. We should all learn from Henry what his family has learned–to live well and laugh hard.”

Laurie is the founder and executive director of the Hope for Henry Foundation, which brings entertainment, laughter, and smiles to seriously ill children. She also acts as a family advocate in the national discussion of ethics and genetics. She is a regular panelist on Clear Channel’s Sunday radio program Women Talk and lives with her family in Washington, D.C. Please visit her website for more information.

Welcome, Laurie, and thanks for telling us about your path to publication!

I think there is a correlation between the time it takes to get a book published and how good it feels to hold it when the very first copy arrives at your door. Yesterday afternoon I found two cardboard boxes on my porch secured tightly with tape advertising in bright red, NEW RELEASES, NEW RELEASES, NEW RELEASES. The boxes were imprinted with the following beautiful words, “Strongin/Saving Henry.” After taking photographs of the tape, the boxes, along with a close-up of the words, I carefully opened a box, and pulled a book out. I hugged the book. I posed for more pictures with the book. I kissed the book. I watched the Olympics with the book by my side. I slept with it on my night table. It was still there when I woke up this morning.

In the end, it took less than a week to secure a publisher for my first book, Saving Henry (Hyperion, March 2, 2010). That delightful development in the summer of 2008 was preceded by five years of hard work, a good mix of persistence and patience, and a tolerance for seemingly relentless rejections which were only made better by reminding myself that JK Rowling got 12 rejections before Harry Potter was accepted by one wise and talented (and probably rich by now) publisher. JK Rowling’s was “too long and complex” for the children’s market; Saving Henry was “too sad.”

I first started writing the book that became Saving Henry while my husband and I were engaged in a battle to disassociate the word “fatal” from the disease that threatened to steal my firstborn son Henry. We had the good fortune of being among the first in the world to use genetic testing to knowingly get pregnant with a baby who would be healthy and whose umbilical cord stem cells could save Henry’s life. Being first meant that there was little to no information, no one to talk to, and no success rate in which to take comfort. Writing gave me an outlet for my combined feelings of gratitude for having something we could do to help Henry, fear for his life, and growing concern as we came to learn what now seems obvious and inevitable – new scientific discoveries rarely work for the first people who try them.

Shortly after Henry died, I decided to write a book about Henry’s valiant fight and magnificent but far-too-short life; and our experience on the medical frontlines. In the spring of 2003, I wrote a query letter, proposal, and sample chapter which I sent to a list of agents who represented all the authors I knew. The reaction was consistent, flattering, and ultimately totally disappointing. That the story was “compelling,” and the writing was “beautiful” was unanimous, as was the decision to pass.

I received each rejection with a mix of disappointment and determination. There had to be someone in the publishing world who shared my belief that Henry’s story is inspiring and energizing. For a time, it looked like that someone might have been behind a desk at Kinko’s where I was looking for self-publishing options. It was February of 2008 and I had beyond exhausted all my leads. By August, I had finished the book. I loved the book. I even decided that it would be just fine to print a few copies so my husband Allen and I, and even more importantly, my sons Jack and Joe would always remember Henry. Somehow I think that letting go of the need to find a publisher was just what I needed to ready myself for finding one. Within one week of completing the first draft of Saving Henry – and nearly five-and-a-half years after setting out to write it – I shared dinner with a colleague interested in Hope for Henry, the nonprofit Allen and I founded to bring smiles and laughter to seriously-ill kids who spend too much time in the hospital. He asked about Henry and as I told him of Henry’s courage, sense of humor and spark and all we had done to ensure he’d be in our lives forever, my friend paused and said, “That would be a great book.” I sent him a copy the following day which he in turn shared with his colleague who happened to be Hyperion’s publisher. Within days, I had an agent and a publishing contract. You can read Saving Henry, one of Hyperion’s Inspirational Memoirs, beginning on March 2.

Wednesday, March 3, 2010

Would You Have A Baby to Save Your Firstborn?

This appeared in Strollerderby, the mother of all parenting blogs, on babble, a terrific parenting website.

In her new book, Saving Henry, Laurie Strongin talks about the struggle to save her first son from a fatal illness – by giving birth to the perfect genetic donor.

This technique has received a lot of press and criticism over the past decade, and been the topic of a sensational and popular novel. It’s a strategy that Laurie’s family and her son’s doctors pioneered. In an interview this week with ParentDish, she puts a human face on this controversial practice.

Strongin’s oldest son, Henry, was born in 1995 with Fanconi Anemia, a rare disorder that can lead to bone marrow failure, leukemia, and cancer. It’s treatable, but requires a bone marrow transplant. Bone marrow transplants are notoriously difficult to find a genetic match for.

Her second son was born healthy, but not a match for the donor tissue Henry needed. At that point, his doctors encouraged her to try a new IVF technique called pre-implantation genetic diagnoses (PGD) that would allow them to select for healthy embryos that would be a genetic match for Henry.

Strongin agreed and underwent 9 unsuccessful IVF cycles in an attempt to give birth to a baby whose umbilical cord blood could save her oldest child’s life. She later conceived a third son the old fashioned way. Like her second, he is healthy but not a genetic match.

Henry’s illness took his life at age 7. Since then, other families with terminally ill children have had success with PGD.

There’s been a lot of criticism of the notion of having a “savior baby”. In the abstract, it’s easy to imagine it being a raw deal for the new baby, growing up in the shadow of the older, sick sibling. But Strongin’s voice is so strong, clear and poignant when she talks about the options her family faced, it’s hard to imagine wanting to argue with her about it. Her love for all her kids is so palpable.

She’s the first to criticize using selective implantation of embryos to create “designer babies”, saying:

I do not understand, nor support, the use of PGD to produce a girl or boy for ‘family balancing’ or a baby with a preferred eye color or hair color, propensity for a high IQ or heightened sports ability. This corruptive application of a life-saving technology threatens to turn public sentiment against its intended and higher use.

Reading a mother’s own words about this process made me realize I would do this myself in a heartbeat. Facing the alternative to have another healthy baby whose cord blood  might be able to save my dying child’s life, or watching my kid die? There’s really no question there.

It seems worth noting, too, that the key thing doctors needed from the miracle baby Strongin was trying to have was his umbilical cord blood. There’s nothing invasive or dangerous about that procedure for the new baby. In most cases, this precious genetic material just goes in the trash shortly after birth.

In addition to sharing her family’s story, Strongin hopes her book will raise awareness about the value and importance of stem cell research.

Wednesday, March 3, 2010

A Mom’s Journey: DC Woman Recounts Her Child’s Life, Efforts to Save Him

This article appeared in the Washington Jewish Week on Wednesday, March 3, 2010.

by Eric Fingerhut, Special to WJW

Fourteen years ago, District resident Laurie Strongin remembers, it seemed almost like “science fiction” the notion that you could “pick the baby you could get pregnant with.”

Moreover, cells from that newborn might save the life of her young son, Henry, who was suffering from a rare genetic disease, Fancomi anemia.

A new vitro fertilization procedure known as preimplantation genetic diagnosis (PGD) could potentially achieve both results, but it was ethically controversial. For guidance on whether to use it, Strongin and her husband, Allen Goldberg, turned to Jewish values.

PGD would enable doctors to select the right embryo for implantation, one that would allow Strongin not only to give birth to a child free of Fancomi anemia, but would also provide a perfect match for the stem cell transplant that Henry needed to save his life.

“Saving a life is held in the highest regard in Judaism,” Glover Park resident Strongin said in an interview last week discussing her new book, Saving Henry: A Mother’s Journey. “It was very clear to us, and consistent with that Jewish value in not only Henry’s life, but the baby’s life to not have this disease. … To us, the decision was clear.”

In the end, PGD wasn’t successful, although Strongin and Goldberg did later have another child Joe, now 8 naturally. Saving Henry tells the story of the in vitro process (now more common), but also recounts the life of Henry, who died at the age of 7 in 2002 and, said Strongin, was “such an incredible lover of life.”

Each chapter of the book, released by Hyperion on Tuesday, begins with a few items from the list of “Henry’s Favorite Things” everything from Batman and baseball great Cal Ripken Jr. to Shabbat Sing at Adas Israel’s Gan HaYeled Preschool. And Strongin said Henry’s zest for life “he looked at medical procedures as something to get over with to get back to what he was doing” inspired doctors and others he came in contact with to “work harder to find a cure.”

“I hope that will be inspiring and hopeful to any parent that reads the book, not just those facing a terrible illness,” said Strongin, 44,

Strongin, a D.C. native who grew up in Chevy Chase and graduated from Bethesda-Chevy Chase High School, said part of the book came from contemporaneous material she kept a journal during the PGD experience and sent e-mail updates to friends and family during Henry’s bone marrow transplant. After Henry died, she said she wove those together and “added Henry and his spirit and who he was as a person,” which she said helped her deal with the loss.

“I spent almost 24 hours a day with Henry the last couple years of his life,” she recalled. “It was an incredibly intimate relationship, and after he died, I still had a need to spend a lot of time with him. Writing about him fulfilled that need.”

“It was painful, but also a beautiful way to remember everything that was so wonderful” about Henry,” she said, noting that the book is “infused with those good times” with her son.

Strongin said, though, that she still is unable to write about the final few days of Henry’s life; to tell that part of the story, she used blog entries her husband wrote at the time.

Fancomi anemia, like Tay-Sachs, is considered a Jewish genetic disease because Ashkenazic Jews are disproportionately affected, said Strongin, who belongs to Adas Israel Congregation in D.C. About 8 percent of those who suffer from the disease are Jewish. The condition leads to blood failure, which necessitates a bone marrow transplant by the time a child is 6 or 7 years old.

Prenatal testing told them that Henry’s younger brother, the now-13-year-old Jack, would be born without the disease. But the chance of producing an embryo with the bone marrow match, but without Fancomi, was only 18 percent, and nine cycles of in vitro fertilization did not produce a pregnancy.

It was not easy going through IVF, a difficult physical and emotional procedure for any couple, especially those knowing that the life of one of their children hangs in the balance.

“It was an absolute real-life race against time,” said Strongin. “That sense of urgency [was] paired with higher and higher stakes as time went by,” as she and her husband watched Henry’s blood counts drop. But Strongin said she always looked to Henry and wondered, “What did I have to complain about?”

Henry eventually had a bone marrow transplant from an anonymous donor, but complications resulted. He died not long after his seventh birthday. As a menorah burned in his hospital room, his final words before being placed on a ventilator were “Mom, this is a very bad last night of Chanukah.”

They would be his last words; Henry died a few days later.

Since Henry’s death, Strongin, a former nonprofit executive, has created the Hope for Henry Foundation. The organization fills a need Strongin saw during Henry’s illness: hospital resources that lift children’s spirits and allow them to “laugh and have fun.” The foundation, operating in hospitals in the D.C. area, Baltimore and Philadelphia, provides patients with such things as birthday parties, iPods and cameras that allow them to send pictures to their friends.

And even after he was gone, Henry was still having an effect on others. At the young boy’s funeral, one of his doctors from Georgetown University Hospital sat down next to a then assistant rabbi at Adas Israel. Dr. Ali Mendelson and Rabbi Jeremy Winaker were engaged a year later, with Max Henry Winaker born in 2007.

“It was so beautiful,” said Strongin about the name. “It was such an incredible honor.”

Content © 2010 Washington Jewish Week

Tuesday, March 2, 2010

Having a Child to Save Another

Yet again Lisa Belkin beautifully captures the impact of Henry’s life. This article appeared in Lisa Belkin’s excellent blog on adventures in parenting.

Having a Child to Save Another
By LISA BELKIN

Back when I was a medical reporter for The Times, Laurie Strongin and her husband, Allen Goldberg — and most of all their son Henry — became the faces I saw whenever I wrote about medical milestones. I met them when they were one of the first two families to try a new technology called preimplantation genetic diagnosis, or P.G.D., to have a baby who could donate the bone marrow that Henry, who was born with the genetic disease Fanconi anemia, needed to live.

What Laurie and Allen did was controversial at the time. Actually, some people think it still is. Congress shut down the lab that was working on P.G.D., calling it illegal stem-cell research. That led to an 18-month delay that may well have cost Henry his life. Laurie went through nine in vitro fertilization cycles before and after that pause, and each time the embryos transferred were not only free of the genetic flaw that threatened Henry but were also his bone-marrow match. Nine attempts failed to take, and Henry had to settle for an imperfectly matched unrelated donor. He died in 2002 at the age of 7.

Since then Laurie and Allen have been passionate about the following: each other; their two younger sons, Jack and Joe; the Hope for Henry Foundation, which they created to bring smiles (and distracting electronic gifts) to children who spend too much time in the hospital; and spreading the word. Embryo and stem-cell research are not about petri dishes and microscopes, they say, but rather about little boys who idolize Batman and Harry Potter. P.G.D. is not about designer babies or children as spare parts, but rather about parents who will fiercely love the child who is conceived to save another child they fiercely love.

Laurie writes of all of this in her new book, “Saving Henry: A Mother’s Journey,” which is out today. It is about love and science and hope and disappointment. It is a timely reminder that the reason so many of our children are healthy is that other children died trying. As Laurie writes:

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.

Laurie and Allen know this is true because they have heard from some of these families. One of those is the Kelleys, whose son, Hunter, was also born with Fanconi anemia. Perhaps the most moving moment of my professional life was when Laurie and Allen shared a letter they received from Hunter’s father, who wrote about reading the magazine article I wrote about their fight to save Henry. It read in part:

For a year and a half we searched for answers as to how to help Hunter. In 2001 we learned that P.G.D. was now available to F.A. patients. It was about this time my wife read your New York Times magazine article. We immediately decided we had to give P.G.D. a try. After four cycles and many ups and downs, we got pregnant.

On Dec. 9, Cooper Kelley was born. A perfect match for Hunter. On Jan. 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 to thank Henry. You see, if we had never read that New York Times article, we would have never tried P.G.D. Your determination to succeed at P.G.D. 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.

Tuesday, March 2, 2010

Mother Details Efforts to Use Science to Save Her Dying Son in New Book

This Q & A appeared on AOL’s home page and in ParentDish on Saving Henry’s release date, March 2, 2010.

by Melissa Kossler Dutton

Laurie Strongin’s new book, Saving Henry, details her family’s struggles to save their dying son.

With a young son in need of a bone marrow transplant to beat a deadly disease, doctors urged Laurie Strongin to get pregnant. The goal: genetically engineer a perfect donor for Henry.

Using science to conceive a third child and save her oldest son’s life seemed almost “too good to be true,” Strongin, of Washington, D.C., recalls. The strategy, which the family and their doctors pioneered, raised ethical debates among researchers and parents, and was dramatized in a best-selling novel.

Henry was born in 1995 with Fanconi anemia, a rare genetic disease that causes bone marrow failure and can lead to leukemia and cancer. Her second son, Jack, did not have the disease but was not a genetic match to Henry. Doctors offered Strongin and her husband, Allen Goldberg, the opportunity to use preimplantation genetic diagnosis to select and implant embryos that did not carry the disease and would be a genetic match for Henry. Strongin underwent in vitro fertilization with the hopes of carrying a child whose umbilical cord blood could be used for a bone marrow transplant for Henry.

“There’s clearly a benefit to being in a family that has not experienced the death of a child,” says Strongin, of her decision to pursue the procedure.
After nine failed attempts, Strongin gave up on in vitro fertilization. She and Goldberg later conceived a third child, Joe, who was born healthy but not a match for Henry. Henry, who received a transplant from an unrelated donor, succumbed to his disease in 2002 at age 7.

Strongin, who details her family’s journey in a new book, Saving Henry, shared her harrowing experience with ParentDish.

ParentDish: How does it feel to have this book published?
Laurie Strongin: It was like getting through another part of my life with Henry that was challenging and exhilarating. It fulfilled a desire to spend time with Henry.

PD: Are you worried that people will find the book depressing?
LS: It’s such a story of hope and such a story of the promise of science. People have said they felt exhilarated and determined to be a different kind of parent after reading it.

PD: What message would you like readers to take from the account?
LS: Make each day meaningful, and what really matters and what’s important is the impact that one life can have on the world and so many other people.

PD: What impact do you think Saving Henry will have on conversations about pre-implantation genetic diagnosis (PGD) and creating babies to save the life of a sibling?
LS: This book really humanizes the debate about those issues. Now, when people talk about those issues (they) have a boy to help guide them — make the conversations more real.

PD: What was your reaction when you learned that it would be possible to select embryos to create a child that could be born healthy and a genetic match for Henry?
LS: We thought a lot about it, but there was never a point where we said this is not a good idea. It was a matter of life or death.

PD: What would you have done if genetic testing would have revealed that your second baby, which you conceived naturally, also had Fanconi anemia?
LS: I can’t even answer that hypothetical. I don’t know because it didn’t happen. I was very grateful we had choices. I don’t know if I would have gotten pregnant if I didn’t know I had choices.

PD: Many people debate the ethics of screening embryos for genetic traits. What are your thoughts on parents using the testing?
LS: PGD is an invasive, painful, time-consuming and expensive procedure that should be used sparingly by doctors and patients to help families produce healthy babies. For couples with a high likelihood of passing along a fatal disease to their child, it replaces luck with certainty in a situation fraught with life-or-death stakes.

I do not understand, nor support, the use of PGD to produce a girl or boy for ‘family balancing’ or a baby with a preferred eye color or hair color, propensity for a high IQ or heightened sports ability. This corruptive application of a life-saving technology threatens to turn public sentiment against its intended and higher use.

PD: After your second child was born healthy, you started in vitro fertilization to have a third child that could donate cord blood to Henry potentially save his life. Was the decision more about saving Henry or growing your family?
LS: To think that we were conceiving a third child who would be loved any less is misplaced. It’s not what it is. Most loving committed parents do anything for their children. The fact that a baby is a savior doesn’t mean it’s loved any more or less for it. We were always planning to have multiple children. We just thought we would have three kids.

PD: Did you ever consider having another child after Henry died?
LS: We were never trying to replace Henry. We never had any additional children after Henry died. We love the fact that everyone in our family knew each other, and we were all here together. It would be hard to have another child that Henry didn’t know and who didn’t know Henry. That was unimaginable.

PD: During your in-vitro attempts, you endured 353 injections over three years and dealt with excessive bruises on your stomach and thighs. How did you handle the discomfort?
LS: None of it really bothered me at all. It paled in comparison to Henry and what he had gone through. It was just what I had to do to save his life. Webelieved it was our only hope for Henry.

PD: How did you survive the emotional roller coaster of the nine failed attempts at in-vitro?
LS: It was a waste of time to feel sorry for ourselves. We had no guarantees of how long Henry would be with us. Getting in bed and pulling the covers over our heads felt like a bad choice. There wasn’t any time to feel sorry for ourselves. There was too much fighting to do.

PD: Jodi Picoult’s novel, My Sister’s Keeper, dramatizes the issue of a child being conceived to save the life of her sister. The fictional parents and their decision are portrayed in an unflattering light. What are your impressions of the book, which was written after a New York Times Magazine article about your efforts to save your son?
LS: I’ve never meet Jodi Picoult and never spoken with her. When I read the book, I thought, “This sounds very familiar.” I think it took a nuanced, very gray issue and made it very black and white and aroused fear in people.

PD: You’ve met families that were successful in conceiving a baby to save another child. Does the book capture that situation?
LS: I felt like those parents (in the book) were far less attuned and less in love with the other two children. Their actions were unfamiliar. I don’t think I have anything in common with that mother. I found it troublesome.

PD: Does the book offer a realistic picture of what it’s like to be the child created to save a sibling?
LS: My understanding is the donor can never again give blood cells. The donor daughter constantly was giving blood. I don’t think that happens. I don’t know what the likelihood is, if the transplant failed, that they would go back to the same donor.

PD: A lot of people disagree with the practice of creating donor or savior children. How do you respond to them?
LS: My guess is people who judge others … probably don’t have a child who is going to die without the stem cells of a sibling.
[Knowing] you saved the life of an older sibling who now you have a loving relationship with, it’s a beautiful thing.

PD: What issue would you like to see get more attention?
LS: The potential of stem cell research. Doctors can understand what diseases look like at earlier stages [and become] better able to find and improve treatments and cures. That’s critically important.

PD: How has Henry’s death impacted your other children, Jack, 13, and Joe, 8?
LS: Growing up they each had a very different relationship with Henry. Jack was turning six when his brother died. He was very aware that his big brother and best friend had died. Joe was one. He has no active memory of Henry. Jack is a lot more private of Henry. When he meets people, he will not share that piece of information. But he thinks about him a lot. Joe is really interested in connecting himself (to Henry). He tells people, “I have two brothers. Jack is 13. My brother Henry died.”

PD: Do they feel guilty for living?
LS: I don’t think they feel any guilt for being healthy. I feel like their overwhelming feeling toward Henry is pride. They look at him as a really courageous person.

PD: You’ve said having a sick child impacts every aspect of your life. What kind of financial impact did it have on your family?
LS: We always had a roof over our heads. We always had food on our table. We did go through almost all of our savings at that time, but that’s what it was for — to keep us all intact and as healthy as we can be.

PD: What political changes would you like the book to spark?
LS: The freeing up of federal resources to support stem cell research is critical. As genetic testing becomes more widespread, I hope there will be regulation of the industry.

Tuesday, March 2, 2010

Saving Henry is Featured on The Bob Edwards Show

I had the incredible good fortune of being interviewed by Bob Edwards, someone I have long admired. We talked for an hour about my new book. Below is a piece that The Bob Edwards Show put on its blog the day the radio show aired.

SAVING HENRY

Laurie Strongin and her husband Allen Goldberg are not the type of people who give up easily. When they learned their child Henry had a fatal genetic disease called Fanconi anemia, they quickly decided to do everything they could to remove the word “fatal” from that diagnosis. Their efforts were unsuccessful, ultimately, but what they did succeed in was removing the word “disease” from Henry’s life. The book Saving Henry tells a remarkable story of a child who never thought of himself as sick and a family who decided to pack as much living as they could into Henry’s short life.

Parents will find the book simultaneously rewarding and difficult. Strongin writes so well about her happy, precocious first-born son — detailing his favorite things, recounting family vacations — that we begin to forget that word “disease” too. The inevitable result of Fanconi anemia comes as a shock, even in print. Strongin says she thinks of Saving Henry as a hopeful book, and I agree. There’s a lesson in it about eating dessert first, putting fun ahead of chores, and learning not to sweat the small stuff.

Goldberg continues to write letters to his son at this blog. And he and Strongin decided to share Henry’s positive outlook on long-term hospitalization through the foundation Hope for Henry, which brings a little joy to children with life threatening illnesses.

-Geoffrey Redick

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