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Archive for March, 2010

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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Saturday, March 27, 2010

Kids Say the Darndest Things

Below is a review from my youngest book critic yet, a 12 year-old girl named Madi. Read on.

Laurie,

My name is Madi and I am 12 years old. I will be 13 in June.  My mom went to your recent book signing. Before she left she she told me about you, your family, and your book. After I heard about your book and the main overview, I asked her to get me a copy while she was there. I had stayed home that night with my 9 year old sister and a babysitter. My parents came home and handed me your book and told me to look inside. I saw that you had signed it. They also told me that you had wanted to hear my thoughts after I was done with the book. Well, I finished it last night so I am here to give you my thoughts!

Saving Henry is without a doubt the best book I have ever read. It is also the most inspirational. When I read this book I not only felt scared, happy, and sad but I also learned more about this disease and about genetics. We were in our genetics unit in Science class when I was reading this book so I think it might have helped. In the first few minutes in to Saving Henry all I could do was smile as you told Henry and Bella’s love story! It was so sweet and I was amazed at how young and happy they were when they fell in love. As I read your second chapter Becoming Henry’s Mom I was happy crying at first and then when he I learned of all the things happy those tears weren’t so happy anymore. I commened you for being so strong during this time and being able to right about it later. When you first learned that Henry had Fanconi Anemia i was shocked and amazed at how such a thing could happen to such a happy family. And of course I had no idea what Fanconi Anemia was at first, just like you, and so I googled it. Just as I googled many other things mentioned in your book. As you described what Henry’s life was like outside of being sick and being in the hospital I was shocked that he was even the same kid. He seemed so loving and happy and well, not sick. And you motto “Live Well and Laugh Hard” really came through in your story.

This book is amazingly written and it was so powerful and strong. Henry was an amazing boy and had amzing parents and had an amzing pair of brothers. I think your story is fantastic story and that you should contnue to share this with everyone. Youre story really spoke out to me as I’m sure it will many other people.

When I was reading this book I would bring it to school everyday and I would carry it with me everywhere I went in order to get the full impact. A lot of my friends asked about it and they all seemed really interested. A lot of my teacher’s also noticed and asked about it as well and they are now going to go get a copy and pick it up to read!

Thank you so much for sharing this story with the world and especially thanks for sharing it with me. I pray for Henry and your family every night! Give my best to Allen, Jack, and Joe.

Thanks,

Madi

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Friday, March 26, 2010

Overcoming Trepidation

I’ve heard from so many people about their trepidation surrounding reading Saving Henry. Life is tough.It’s filled with sadness. It’s hard to imagine spending what little time you have to yourself reading a book about a little boy who dies. But then something happens. Someone recommends the book. You hear about the book on the radio or on TV. You read about the book.

You buy the book.

Below is an email I got today from a recent Saving Henry book party host that so beautifully communicates one of her guest’s hesitation about reading Saving Henry and her reaction once she makes the decision to do so.

Boy, was I not going to read that book. I was certain of it, and even had trepidation about the party, but hey, I like you guys, and I like a party. Still, who wants additional tsurris; there’s enough sadness. But that Laurie was just so positive and appealing and smart that I really enjoyed her presentation, even with a tear or two rolling down my cheek. I bought the book, of course, thinking, well, it’s the right thing, but still not thinking I would read it. But maybe thinking it a little less. Then I left it on a counter near the kitchen where I would keep looking at it. I did not put it away where I could forget about it. Instead, I kept thinking about Laurie and how she presented this and what an incredible story it sounded like. Before I knew it, I cleared away a little chunk of time and read it from last night until this morning.

It reads like a mystery that you know the end of, but still need to find out how to get there.

It reads like an incredible love story that, again, you know has a sad ending, but was so worth it all the way.

It reads like a family chronicle of strength and support in a very Jewish way, for me.

It reads like an adventure story filled with Funland, Disney, Pringles, M&M’s, and lots of ice cream.

It completely reads like a true hero story, and while I know it’s Henry, it is so so Laurie. She keeps marveling at his courage, his attitude, his positivity, and while I know kids come with their own little packaged personalities, there is nurture involved, and he gets so much of his approach to life from her. That is clear as day.

It’s not maudlin. I did not cry reading it. I was too interested. She doesn’t try to pull our heartstrings, but they are pulled nevertheless. Now, digesting it, writing this to you guys, thanking you for putting Laurie and this book in my path, now I am crying. For her loss, for all of our loss. For gratitude. Since my mom got sick, we have been focusing on living each day the way Laurie talks about it. Maybe not as many Pringles, mind you, but lots of theater and dinners and spending buckets of time together and laughing. My Mom has taken whatever energy she has and gone on vacations with my dad, taken music classes, and, most importantly, continued her work on the Otis Beautification Committee, filling huge barrels with flowers all over the tiny town of Otis where they live in the Berkshires. Even as she is leaving, she is making the world a better place, as did Henry, as does Laurie.



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Friday, March 26, 2010

Publishing Executive, Soccer Mom and Much More Weighs In on Saving Henry

On her blog, ConfessionsOfAnItGirl.com, Ellen Gerstein ponders publishing, marketing, social networking, life as a working soccer mom and more. Today she turned her thoughts to Saving Henry. Here’s what she had to say:

This weekend, I had the privilege of joining a group of local moms to celebrate the publication of a new book.  Laurie Strongin’s ”Saving Henry: A Mother’s Journey” published at the beginning of March, and to mark this most momentous milestone, she has been on the road talking to groups of people and the media about Henry’s story.  Sunday’s party was hosted by Lisa Belkin and Allison Fine at Lisa’s lovely home.

Who was Henry and why did he need saving, you may ask?  Henry was Laurie’s son, who by all accounts was a charming, fun-loving little boy who had the misfortune to be born with a rare, almost always fatal disease called Fanconi anemia.

Let’s get this out-of-the-way right off the top….when you hear that a book has a child dying in it, your first instinct isn’t OH MAN, LET’S RUN OUT AND BUY THIS SO I CAN READ IT IMMEDIATELY!!!  Yet after meeting Laurie and learning a little about Henry, it’s my number one read on my Kindle right now.   Like Vick Forman’s “This Lovely Life“,  it’s a story about a family facing every parent’s worst nightmare.  But somehow, in talking about the lives that were lost, you as a reader you come out of the book hopeful and joyous.

Saving Henry tells of Laurie’s  family’s efforts to find a cure for Henry, which unfortunately was not to be.  But it’s more about how this life that was cut so short mattered greatly.  There are tons of stories about how he was as a boy, and you can only imagine what kind of man he would have turned out to be.  His life inspired the Hope for Henry foundation, that does so much good for children in need.

I was honored to be a part of this special event, and hope you will check out the following links to learn more about Laurie Strongin and her son Henry…dare I say that this story of a most amazing mother would make a perfect Mother’s Day gift?

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Thursday, March 25, 2010

Saving Henry is Slate’s “Book of the Week”

Below is a piece by Hanna Rosin that appeared on slate.com, designating Saving Henry as the “Book of the Week”

A decade ago, Laurie Strongin and her husband, Allen Goldberg, lived on the edges of reproductive technology. Their son Henry was born with a rare and fatal disease, Fanconi anemia. They used a method called preimplantation genetic diagnosis (PGD) to try to conceive another child who would not have the disease and be a bone marrow donor to Henry. The ordeal, chronicled in the New York Times Magazine, made them objects of fascination and sometimes horror: Was it OK to have one child to save another? Was this a distortion of parental love or its ultimate manifestation?

In her new book, Saving Henry, Strongin answers the question. Her answer is, essentially, how could you not try? She convinces us of this by lovingly recreating Henry’s childhood in its mundane and dramatic moments, making it clear that if you see the picture from inside the intimacy of a loving family, no parent would do it any differently.

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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.

Sunday, March 14, 2010

Changing Minds

One of the many things I hoped to accomplish by publishing Saving Henry was to humanize the conversations around stem cell research, preimplantation genetic diagnosis, “designer babies,” and “savior siblings.” By doing so, I hoped to change minds. This week I got an early sign of progress toward that goal. The piece below was published by a thoughtful woman named Ellen Painter Dollar who publishes a blog called Choices That Matter: A Place for People of Faith to Reflect on Assisted Reproduction, Genetic Screening, Prenatal Diagnosis and Disability.

What I Learned from Saving Henry

I wrote last week about the power of stories to change us and how we approach a complex topic such as reproductive ethics. After reading Saving Henry by Laurie Strongin, I am changed.

Strongin and her husband, Allen Goldberg, used preimplantation genetic diagnosis (PGD) to try to conceive a child who would not only be free of Fanconi anemia (the fatal genetic blood disorder that affected their first son Henry), but would also be a matched donor whose umbilical cord stem cells could be painlessly collected at birth and transplanted into Henry, allowing Henry to grow new bone marrow that would produce healthy blood cells. Strongin asserts, “I believe in love and science. Nothing more. Nothing less.” While she makes reference to her family’s Jewish rituals here and there, this book really is about love and science, not faith, so I was unsure how relevant it would be to my faith-centered work. But this family’s story forced me to more closely examine some assumptions and terminology at the heart of ethical debates over the use of PGD.

PGD can be a means to cure, even eradicate, some genetic diseases. Think how often we name “a cure for cancer” when we talk about positive goals that will make the world a better place. I never hear people argue that we shouldn’t try to eradicate cancer (through cure or prevention) because it is God’s will that people have cancer, and eradicating cancer would threaten the dignity, acceptance and identity of those who have it. Yet those arguments are ever-present in discussions about eradicating genetic disease.

Laurie Strongin went through nine expensive, painful and unsuccessful PGD cycles because she wanted to save her son’s life and banish a deadly disease from her family. While gene therapy, transplant medicine and drug treatments are always being studied and perfected, for now, most genetic disorders are managed, not cured. The mutations that cause genetic disorders are present in every cell of affected people’s bodies. Curing these disorders means figuring out some way to silence or overwrite the messages these mutations send. Or, alternatively, ensuring that the mutations do not get passed onto the next generation. The second option is available now for many genetic disorders, while the first is years away in most cases.

There are vital differences, particularly from a faith standpoint, between curing a disease by treating the person who has it and curing a disease by destroying embryos who have it. I care about those differences. But I understand—in my bones, literally, given that my husband and I did PGD (also unsuccessfully) to try to prevent passing on my bone disorder—the desire to destroy an enemy by stopping it in its tracks.

What do we mean by “dignity”? Opponents of reproductive technology and stem-cell research frequently say that such practices compromise the “dignity” of human embryos. According to Merriam-Webster, “dignity” is “the quality or state of being worthy, honored and esteemed.” Before criticizing physicians and parents who advocate for PGD as threats to human dignity, we should take a step back and examine their attitude toward the medical process in which they are engaged.

Nowhere in Saving Henry did I see evidence that Henry’s parents or their doctors were cavalier about human dignity. The worth and esteem they ascribed to Henry, his brothers and their potential future children were apparent on every page. Some will argue that simply by doing PGD and discarding embryos that did not meet their criteria, they violated human dignity, even if they did so with full awareness of the weight these decisions carry. But I did not come to the final page of Saving Henry with the sense that I had just witnessed a degradation of human worth. And, in my work on reproductive ethics, I do come across people whose comments take my breath away with their lack of insight into the potential for reproductive and genetic technology to be used in ways that endanger our most essential human values. There are, unfortunately, people whose attitudes around reproductive technology do violate human dignity, but this book is not the place to find them. Rather, this is one of those books that reminds readers that, in the bustle and trivia of daily life, we often fail to notice what and who is worthy of our attention, love and gratitude.

For me, perhaps the best “proof” (though these kinds of things can’t be proved) that Henry’s parents cared about children’s dignity, worth and value is that they ended up having two more sons after Henry, both conceived naturally. The first, Jack, was conceived before they knew about PGD, but after they knew that Henry had Fanconi anemia and that any future children had a 25 percent chance of having it too. The second, Joe, was born years later, after nine unsuccessful PGD attempts and when Henry was beginning a deterioration that eventually led to his death at age 7. Strongin and Goldberg decided, even in the midst of such heartache, that they would have the third child they longed for, despite the significant risk of fatal disease and the unlikelihood that this new baby would be the matched donor that Henry needed to survive.

Lines can, and should, be drawn. The physician who developed the PGD procedure to test for embryos that would be a good donor match for Fanconi anemia patients, such as Henry, had stringent criteria for couples who wished to use this technology. He insisted, for example, that only couples who had already expressed a desire for more children were eligible. Strongin and Goldberg were one of only two couples accepted to test this new PGD procedure because, when they first learned of it, Strongin was already pregnant with their second child. Clearly, this was a couple for whom having more children was primary, and providing a matched sibling for their ailing son was secondary.

Their doctor understood that, with cutting-edge technology that involves the very beginnings of human life, lines can and should be drawn to try to keep the technology from inappropriate use. Strongin and Goldberg also argue for those lines. Goldberg wrote this op ed in 2009, seven years after Henry’s death, arguing that some fertility clinics’ willingness to use PGD so that couples can choose their babies’ gender and hair color demeans the technology and threatens its legitimate use as a life-saving response to devastating genetic disease. Three weeks after Henry died, Strongin took part in a panel discussion sponsored by Johns Hopkins on reproductive genetics policy. “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,” Strongin recalls. “I explained that PGD isn’t about creating unwanted children for their spare parts…I explained that PGD and stem-cell research aren’t abstractions. They are real issues about real people” (p. 259).

Although European society is more secular than American society, European countries have many more regulations in place when it comes to reproductive and genetic technology. Many governments recognize that lines need to be drawn, even if people disagree about where exactly to draw them. In our country, where both religious belief and individual autonomy are valued so highly, we would certainly have a very hard time figuring out where to draw the lines. But if we don’t try, we have no way of ensuring that technology designed to save children’s lives and improve health does not end up feeding our cultural obsessions with beauty, achievement and getting what we want no matter what the cost.

I am still, as I’ve said here on this blog since it began, working to figure out my positions on reproductive and genetic technology. Saving Henry has not convinced me of a clear position; part of me doesn’t really want to have a clear position, because these topics are so complex that I think clarity comes at the price of acknowledging that complexity. I understand why some ethicists argue that, fundamentally, there is no moral difference between using PGD to save a child’s life and eradicate genetic disease, and using it to create a “designer baby.” In both cases, the argument goes, people are creating babies as their own project for their own ends, rather than accepting life as a gift, however it comes to them. But right now, as the words of Saving Henry reverberate in my heart and head, the difference seems obvious and immense.

Saturday, March 13, 2010

You made the little princess feel like a queen.

“You made the little princess feel like a queen.”

That is the message I got today from the grandmother of a little girl undergoing a bone marrow transplant at Dana-Farber Cancer Institute in Boston.

She went on to say, “I just wanted to….no I really need to thank you for the birthday party you gave my grand daughter.  It tears my heart out that we were not able to give her a party like she so deserves and wanted.  Thank you for all that you did for her that day.  I  admire how your love for a perfect little boy has turned into the courage that he has taught you.  You have my  utmost respect for the ability to move forward in life with two boys by your side and one carried in your heart. I have heard you can tell a lot about a person by the kind of light that surrounds them.  I envision you surrounded by bright white angel wings.  Touching lives without judgment.  Understanding the needs of a family without a word spoken.   Holding the hand of someone crying tears of joy, tears of fear, or the tears of goodbye.  Not doing anything or looking for the right word to say.  Instead you demonstrate your gift of understanding by simply being there.”

Instead of spending her birthday in a cheerless hospital room, Emma has an over-the-top Disney Princess party with decorations, party hats, blowers, goody bags, balloons, gifts and so much more. Bringing smiles and laughter to faces of kids like Emma is exactly why we started Hope for Henry. And I’m so glad we did. If you want more information about Hope for Henry, please visit www.hopeforhenry.org.

Saturday, March 6, 2010

Saving Henry, Saving Lives

Behind every medical discovery are the pioneers who undergo risky, unproven treatments that fall short of their promise. Through families like ours, doctors come to understand and perfect life-saving treatments. As you read Saving Henry, you will meet some of the families who benefited from our attempt to save Henry through a new, groundbreaking medical discovery called preimplantation genetic diagnosis. Today I got the email below from a mom who I have yet to meet but to whom I feel a tremendous sense of gratitude for reminding me, yet again, that Henry did not die in vain. (Note: I reduced the daughters’ names to their first initial to retain their privacy.)

Dear Laurie,

It is late on Saturday night, and I have just finished reading Saving Henry. I started reading it yesterday and could not put it down.  I now have a headache from crying.  My heart breaks for your loss.

As a mother who has recently gone through IVF with PGD, you have written so many of my thoughts.  My daughter  L is two years old and has Diamond Blackfan Anemia.  My daughter M is three weeks old, was conceived on our third attempt at IVF with PGD, does not have DBA, is an HLA match for L, and is sleeping so sweetly on my chest.  M’s little head is wet from my tears.

The challenges we faced going through IVF pale in comparison to what you went through.  I know we are the beneficial recipients of advances in science that flowed from your experience.  For that, my heart overflows with gratitude.  I wish I had read your book before starting on my journey through IVF with PGD so that I would have had more realistic expectations.  I will encourage other DBA moms who are considering IVF with PGD to read your book.

Thank you for sharing your journey.  Through your experiences and your book, you have made the world a better place for me and my children, but also for so many parents and patients with conditions like FA and DBA.

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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.

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