Life in Henry's wake: Laurie Strongin won't let her son's death be a total loss
Thursday, March 25, 2010
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.