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

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.

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