Narrative Matters: On Our Reading List

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 disa...
Source: Health Affairs Blog - Category: Health Management Authors: Tags: Elsewhere@ Health Affairs Featured Narrative Matters autism heart disease On Our Reading List Source Type: blogs