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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 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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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

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.