Still, the treatments were now a known option for the families of children with profound disabilities. They congregated on Pillowangel.org, a website and private message board maintained by Ashley’s parents, who have never made their names public, identifying themselves only as “Ashley’s Mom” and “Ashley’s Dad,” or AM and AD. (Their site’s name comes from the endearment given to Ashley and other children like her who spend most of their hours propped up by pillows in bed.) The carefully screened message boards became a supportive oasis in an online environment where, one Washington State mother told me, “parents looking for information about this are made to feel like monsters.”

For years following the controversy at Seattle Children’s, Diekema was unsure how many children had been through growth-attenuation therapy, because no registries track the practice. But then last summer, the Pediatric Endocrine Society published a survey of its members in The Archives of Diseases in Childhood indicating that at least 65 children have received the therapy. (The survey did not break down participants by sex or note whether they had hysterectomies or breast-bud removal.) And by many doctors’ accounts, the demand for it is increasing even as doctors prefer not to talk about the practice publicly. “You might wonder if we’re getting underreporting,” says David Allen, a co-author of the survey and head of the endocrinology and diabetes department at University of Wisconsin American Family Children’s Hospital. “The survey response rate was only 30 percent. We have no good numbers at this point.”

To begin to understand why a parent would choose to disrupt the growth of a child, it helps to know what goes into caring for someone with severe disability. Sandy Walker was a member of the Seattle Growth Attenuation and Ethics Working Group, a panel of concerned parents, medical experts, scholars and bioethicists who developed ethical and policy guidelines for health professionals. In her 50s and physically fit, Sandy has a 20-year-old daughter, Jessica, who has quadriplegia, is nonverbal and needs assistance with all daily activities. In good overall health, Jessica is 5-foot-3 and weighs 95 pounds. She requires either a two-person transfer between bed and wheelchair or a Hoyer lift, a sling-like hanging chair on wheels that moves people in and out of beds, chairs and bathtubs. But the Hoyer is not meant for use in the shower, where Jessica is propped on a stool, so Sandy and her husband, James Walker, rely on two-person lifts that are very difficult when their daughter is wet. “There are many things we can no longer do,” Sandy says, “or perhaps we could do them, but as she gets older, we also get older, and we choose not to.” This means no more hikes in the mountains or swimming at the public pool and the beach.

About nine years ago, the family went to Disneyland. It was still relatively easy to fly with Jessica then, but upon landing she vomited on herself and Sandy. Sandy made a mat from clothes in her suitcase, lay her daughter down in a handicapped stall at the airport and wiped off both of them. “But then I realized the terrible truth,” Sandy says. “I had to lift her, by myself, from the floor to the chair — no easy feat. If ever I wished for a shorter girl, it was then.” Walker believes that if growth-attenuation therapy had been available when Jessica was a small child, she and James would have considered it. “I’ve been shocked by how the disabled community has reacted to it,” she says. “These people speak of the ‘perspective of the disability community’ as though we are not part of it. It makes us feel disenfranchised by the very organizations that were put in place to protect Jessica and our family.”

Cindy Preslar did not want to end up in a similar situation. “I knew we would be his caregivers forever, no matter what,” she told me. “But you think about: My goodness, when my kid’s 15 years old, how am I going to hold and move him?” When she first learned about growth attenuation in a magazine article, shortly after Ricky’s diagnoses, Cindy felt a wave of relief: The idea that Ricky could get the therapy one day was comforting. But she mentioned it to no one. “We’d go to his doctor appointments, then just go on,” she says. She finally brought it up with her husband, Matt, when Ricky was about 2. As it turned out, Matt had seen a reference to the Ashley case on “Law and Order: SVU” and had been waiting for the right moment to bring up the subject himself. They readily decided the therapy was the right thing for Ricky.

The Preslars searched for months before they found a willing doctor, Michael Kappy at Children’s Hospital of Colorado, in Aurora. Kappy had never administered growth-attenuation therapy, but he was an author of a paper justifying and laying out guidelines for its practice. The Preslars flew with Ricky to Colorado twice, first to consult privately with Kappy, then to meet an ethics committee convened by the hospital to approve Ricky’s treatment. Cindy found the ethics-committee members, especially one mother who had had a daughter with disabilities, to be immediately sympathetic. “The meeting lasted an hour or two,” she says. “And Dr. Kappy said: ‘I’ll call it in. What pharmacy do you use?’ And that was it.”