Editor’s note: “Narrative Matters: On Our Reading List” is a monthly roundup where we share some of the most compelling health care narratives driving the news and conversation in recent weeks.
Stunting The Growth Of Children With Disabilities
Parents of children with severe disabilities concerned about being able to physically care for their children as they grow up are finding hope in a treatment known as “growth-attenuation therapy,” but questions about the ethics of the therapy, and a lack of long-term outcomes data, mire the treatment in controversy.
In The New York Times Magazine, Genevieve Field tells the story of Ricky Preslar, a boy born with a form of cerebral palsy that caused permanent brain damage and visual impairment. Ricky’s parents knew the road ahead for him and the family would only grow more difficult as he grew larger and more difficult for his parents to lift and manage on their own.
Growth-attenuation therapy has been around since the 1940s, but its use on a child with a disability was pioneered by doctors at Seattle Children’s Hospital in 2006. The therapy involves doses of estrogen high enough to stimulate the premature closing of growth plates in young children’s bones, thus reducing height. In the 2006 case, doctors also removed the patient’s uterus and breast nodules. Some disability rights activists and other ethicists say the treatment constitutes “unnecessary bodily manipulation” and violates the rights of people with disabilities. According to a recent survey, at least 65 children with disabilities have undergone the procedure, though the figure is likely underreported.
“At its core, the battle over growth attenuation is a battle between old and new ways of thinking about disability: the old ‘medical model,’ which regards disabilities as a problem to be fixed, and the new, ‘social model,’ which frames disability as a natural facet of the human experience,” Field writes.
Cardiology In The Developing World
When Khameer K. Kidia was diagnosed with hypertrophic cardiomyopathy in medical school, his treatment plan was relatively straightforward: he met with a senior cardiologist, who sent his scans to an expert at Mayo Clinic; he made an appointment with an electrophysiologist on the same floor as the cardiologist; and when his surgery date arrived, he walked across the street from his dorm to the hospital and was implanted with an investigational implantable cardioverter-defibrillator designed for young people who wanted a more active lifestyle.
Three years earlier, Kidia’s father had not been so fortunate. Afflicted with a variation of the same disease, Kidia’s father died one morning in his primary care doctor’s office while he was waiting for the insurance company to authorize an emergency evacuation to South Africa. In a Perspective article in The New England Journal of Medicine, Kidia grapples with the inequities between his and his father’s care.
“The $40,000 subcutaneous ICD that rubs against my rib cage is a constant reminder of these inequalities — and my responsibility to become the kind of doctor who will work to reduce them,” he writes. Though cardiovascular disorders are the most common cause of death worldwide, and more than 80 percent of deaths due to cardiovascular disease occur in developing countries, traditional global health efforts and funding have focused on infectious diseases, such as HIV-AIDS and malaria, Kidia writes.
The Unanticipated Consequences Of Treating Autism
For 50 years, John Elder Robison made the best of his autism, but when he was offered the chance to participate in an experimental study on the use of transcranial magnetic stimulation to treat the condition, he signed up (as did his son, who was also on the autism spectrum). The results defied expectations, Robison explains on The New York Times’ Well Blog. The treatment allowed him to process emotions as he’d never been able to before, but this proved somewhat devastating initially.
“Before the T.M.S., I had fantasized that the emotional cues I was missing in my autism would bring me closer to people,” Robison writes. “The reality was very different. The signals I now picked up about what my fellow humans were feeling overwhelmed me.” Eventually Robison adjusted to his post-treatment state, but the changes led to the breakup of his first marriage. In the end, he and his son found the procedure transformative — including in ways they could never have anticipated.
A Serial Killer Of Women
Heart disease is the number one killer of women in the United States. Complicating the matter is the fact that many women don’t experience the telltale signs of a heart attack—chest pain, tightness, or pain in the arm or jaw—until it’s too late. In heart attack survivor Sue Palmer’s case, she says she felt “kind of funny” and threw up twice in the middle of the night.
Though she was ready to dismiss her illness as a virus of some sort, Palmer’s husband convinced her to go to the hospital because she might be having a heart attack. Indeed, it turned out that Palmer was in the midst of a major heart attack when she arrived at the hospital, and due to the quick efforts of her doctors to suction out the blood clot and stent her right coronary artery, she survived. “My lesson is this: don’t think it can’t happen to you,” she writes in an essay for The Washington Post.
Appendix Cancer Patients’ Last Resort
Treatment options for patients with appendix cancer are limited and most are told the condition is fatal. But a growing number of patient—and surgeons—have been willing to try an aggressive, high-risk surgery that consists of cytoreduction combined with heated intraperitoneal chemotherapy, or HIPEC.
STAT reporter Eric Boodman followed cancer patient Stephen Phillips for three months as he consulted medical teams, decided on a physician, and underwent the surgery. The procedure can take 16 hours, in which the surgeon feels out and removes every last tumor in the patient’s abdominal cavity, then pumps hot chemotherapy into the abdominal cavity and sloshes it around to take care of any remaining cancer. Though controversial (the research has yet to catch up with clinical practice) and risky (Phillips has been back to the ICU and operating room since the operation due to complications), the procedure certainly seems to offer hope to those with few other options.
In Case You Missed It
In the March Narrative Matters essay, Carolyn Dickens, Denise Weitzel, and Stephen Brown, write about a patient with complex medical and social needs who returns to the hospital again and again, despite his care team’s best efforts to reduce readmissions.