By Perri Klass
Special to The Washington Post
Tuesday, March 3, 2009
HANDLE WITH CARE
By Jodi Picoult
Atria. 477 pp. $27.95
In a small New Hampshire town lives a family of four: Dad is a cop; Mom was once a professional pastry chef who now spends her time taking care of two daughters. Amelia is a somewhat troubled preteen; Willow is a 5-year-old with a rare genetic disease, osteogenesis imperfecta (OI), type III. And everything else about this family and everything about this novel spins back to that genetic mutation: Willow's bones don't form properly. By the time she was born, she had seven broken bones, which had been seen on ultrasound; four more got broken during the delivery; and by now, five years later, her whole family speaks the language of Willow's vulnerable bones. Everyone knows the sound and the look of another one breaking. This is why Amelia feels left out and angry and self-hating by turns, and this is why the mother's days are a constant challenge of caretaking and advocacy and worry.
And this is what's so good about Jodi Picoult's "Handle With Care." When I was doing my residency in pediatrics (at the same children's hospital where Willow goes for her experimental therapy, which may strengthen her bones but may also have bad side effects years down the line), I was awed by the parents of children with chronic diseases like OI. They seemed to me a fascinating, heroic and almost completely invisible part of the population, recognizing one another, telling their astounding stories, "going to medical school the hard way," as we sometimes called it. Why were there not novels and movies and ballads to celebrate their love and their determination and their very particular side of the story?
Well, here's such a novel. It's well written, it's conscientiously researched and, most important, it presents a character who is a child instead of a disability personified. With her strong personality and weak bones, Willow is a 5-year-old who knows too much. She's jealous of what other children can do.
The action of "Handle With Care" begins when Willow's mother, Charlotte, decides to bring a suit against her own best friend, the obstetrician who took care of her during the pregnancy. It's a "wrongful life" suit, arguing that if the diagnosis of osteogenesis imperfecta had been made at the first prenatal ultrasound, she would have been able to make the decision to terminate the pregnancy at 18 weeks. Instead, the suit argues, the obstetrician missed certain subtle signs, and that diagnosis wasn't made till the 27-week ultrasound revealed those seven broken bones. By that time, Charlotte and her husband were unwilling to consider a late-term abortion.
Everyone around Charlotte is opposed to this lawsuit. Her husband won't have any part of it. Her older daughter is destroyed by it, inside and out, and loses her best friend, the obstetrician's daughter. Willow herself is devastated, correctly understanding that her mother is claiming that it would have been better if she had never been born. The organized osteogenesis imperfecta community is furious. When Charlotte takes her daughter to an OI convention, Willow is overjoyed to be in a group where she's normal, but finds that her mother is a pariah. Even Charlotte's lawyer, a young woman on a quest to locate her birth mother, doesn't like the smell of this wrongful-birth suit.
With the deck stacked against Charlotte, it's sometimes hard to feel much sympathy for her. And yet, this mother is caught between the genuine love she feels for her child, to whom she has devoted herself completely, and the anger she feels at what has happened to her life: "What if it was someone's fault?" she thinks. "How could I admit to anyone -- much less myself -- that you were not only the most wonderful thing that had ever happened to me . . . but also the most exhausting, the most overwhelming?"
Yes, the money she hopes to win could buy her daughter the best wheelchairs, the best summer camps, but for the sake of wringing that money out of the system, she destroys her closest friend, alienates her older daughter, horrifies her husband and damages the child she's trying to help. You don't have to be a physician, with a somewhat jaundiced view of the personal-injury tort system, to wish Charlotte could see what every other character can see -- that she is creating a new and terrible tragedy.
Charlotte's motivation for the lawsuit, which will endanger if not ruin everything she loves, is that she needs money to take proper care of her daughter. I couldn't help remembering my old days at the hospital and the families who would make their way down from New Hampshire, a state notoriously limited in the services it provided to children with disabilities. Those parents all made the same dark joke, quoting the Revolutionary War slogan on their license plates: "Live free or die."
"Handle With Care" is a great read, with strong characters, an exciting lawsuit to pull you along and really good use of the medical context. Picoult does a terrific job of evoking OI and its peculiarities -- from the likelihood that parents might be accused of child abuse (because of fractures that don't quite "make sense") to the incessant push and pull of wanting a child to experience kindergarten friendships, Disney World and ice skating, while worrying constantly that another fragile bone will break.
Klass, a professor of journalism and pediatrics at New York University, is the author of "The Mercy Rule."