The parents of a 9-year-old girl convinced a Seattle hospital to perform a series of ‘mutiliating’ surgical procedures on their daughter to keep her compact-sized and make her long-term care more convenient for them. The procedure (dubbed the “Ashley Treatment” after the little girl’s name) has caused a public sensation after details became known last month, stirring controversy and debate over whether the procedure was ethical or justified to begin with.
Ashley was born healthy and normal, but around the age of 3 months, her brain stopped developing. She has static encephalopathy, a condition where the brain is abnormal and its deficiencies will neither improve nor decrease. In her case, she will never sit up, speak or walk. Her caregivers will always transport her, feed her through a tube and change her diapers. In early 2004, she started to grow pubic hair, develop breast buds and enter a growth spurt. Her parents feared that if she continued to grow she would become too large to care for without special assistance. The mother worried that Ashley would fear her monthly menstruations and suffer from cramps and breast tenderness. Her parents also felt that breasts would "sexualize" Ashley, inviting abuse and pregnancy if she were raped.
Ashley's parents requested the treatment to keep their daughter small and desexualized so they could continue to care for her at home and provide her with the "best possible quality of life." The hospital convened a secret 18-member panel to meet with Ashely’s parents and evaluate the case. The names of the panelists have been kept confidential and the hospital has claimed that it did not make a record of the group’s deliberations.
Several months after the meeting, surgeons at the hospital performed a hysterectomy and removed Ashley's breast buds. Shortly after surgery, they began a 30-month regimen of high-dose estrogen that would limit her adult height by prematurely fusing her bones' growth plates. Today, at age 9, Ashley is 4-foot-5 and weighs 65 pounds. Expected to have a normal life span, she will continue to age-- but she will remain short, never grow breasts, have a period or become pregnant.
After three years, details only came to light when the hospital’s doctors took credit for the procedure in a study published in a leading medical journal. After the article gained widespread attention, the hospital closed ranks--asking that no doctor, aside from Diekema and Daniel Gunther, the endocrinologist who performed the surgery, speak to the media.
Many doctors in the field have publicly called the disfiguring treatment appalling, and have questioned whether disapproval of medical personnel inside the hospital was more acute than has previously been known. "There were a number of people who were not very comfortable with the idea, and other people who weren't comfortable with it at all," said John McLaughlin, director of the neu-rodevelopmental program at the hospital. "In the end, the parents' assertive approach to wanting this done is what carried the day. However, most of us have major reservations about it. My bottom line is that this is one more example of well-intended, but poorly thought-through treatment of kids with disabilities."
Pediatricians outside the Seattle hospital are more pointed. "I think they crossed the line," said Gregory Liptak, an Upstate Medical University at Syracuse professor of pediatrics, who works with developmentally disabled children like Ashley. "What they did to this child takes away her personhood. She's a human being and with that comes all the same rights as you or I have to experience normal development and sexual pleasure." Other doctors say they are uncomfortable that the treatment served to compensate for a non-medical problem. Ashley wasn't sick or in pain, and the treatment "medicalizes" what is basically a care issue, said Dr. Mark Merkens, of Oregon Health & Science University. "This is pretty radical," he said. "Attenuating her growth is one thing, but to do a hysterectomy and breast-bud removal borders on mutilation."
Ashley’s parents, in what many see as an attempt to garner public sympathy, started a blog detailing their experiences. The parents, who refuse to identify themselves, call their daughter a "Pillow Angel" because she is "so sweet and stays right where we place her-- usually on a pillow." On the blog, the parents write, "Ashley has no need for her uterus since she will not have children. [She] has no need for breasts since she will not breast feed and their presence would only be a source of discomfort to her." Remaining child-size, they explained, would not only decrease the incidence of bed sores, but make it much easier to move Ashley around. As a result she "can continue to delight being held in our arms and will be taken on trips more frequently and will have more exposure to activities and social gatherings."
Already at least three other families have approached the hospital, asking them to create their own “Pillow Angels”, according to McLaughlin.
Based on reporting by Rebecca Clarren of Salon.com
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