In a case fraught with ethical questions, the parents of a severely mentally and physically disabled child have stunted her growth to keep their little “pillow angel” a manageable and more portable size.
The bedridden 9-year-old girl had her uterus and breast tissue removed at a Seattle hospital and received large doses of hormones to halt her growth. She is now 4-foot-5; her parents say she would otherwise probably reach a normal 5-foot-6.
Some ethicists question the parents’ claim that the drastic treatment will benefit their daughter and allow them to continue caring for her at home.
The case has captured attention nationwide and abroad. “Offensive if not perverse,” wrote one person on MSNBC.com's bulletin board. “This smacks of eugenics, but I understand the parents thought process,” another wrote.
Right or wrong, the couple’s decision highlights a dilemma thousands of parents face in struggling to care for severely disabled children as they grow up.
“This particular treatment, even if it’s OK in this situation, and I think it probably is, is not a widespread solution and ignores the large social issues about caring for people with disabilities,” Dr. Joel Frader, a medical ethicist at Chicago’s Children’s Memorial Hospital, said Thursday. “As a society, we do a pretty rotten job of helping caregivers provide what’s necessary for these patients.”
The case involves a girl identified only as Ashley on a blog her parents created after her doctors wrote about her treatment in October’s Archives of Pediatrics & Adolescent Medicine. The journal did not disclose the parents’ names or where they live; the couple do not identify themselves on their blog, either.
Left in an infant state
Shortly after birth, Ashley had feeding problems and showed severe developmental delays. Her doctors diagnosed static encephalopathy, which means severe brain damage. They do not know what caused it.
Her condition has left her in an infant state, unable to sit up, roll over, hold a toy or walk or talk. Her parents say she will never get better. She is alert, startles easily, and smiles, but does not maintain eye contact, according to her parents, who call the brown-haired little girl their “pillow angel.”
She goes to school for disabled children, but her parents care for her at home and say they have been unable to find suitable outside help.
An editorial in the medical journal called “the Ashley treatment” ill-advised and questioned whether it will even work. But her parents says it has succeeded so far.
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She had surgery in July 2004 and recently completed the hormone treatment. She weighs about 65 pounds, and is about 13 inches shorter and 50 pounds lighter than she would be as an adult, according to her parents’ blog.
“Ashley’s smaller and lighter size makes it more possible to include her in the typical family life and activities that provide her with needed comfort, closeness, security and love: meal time, car trips, touch, snuggles, etc.,” her parents wrote.
University of Pennsylvania bioethicist and MSNBC.com columnist Art Caplan said the case is troubling and questioned how preventing normal growth could benefit the patient. Treatment that is not for a patient’s direct benefit “only seems wrong to me,” Caplan said.
But Dr. Benjamin Wilfond, a pediatric bioethicist at Children’s Hospital, said that while he "was a little startled" when he first learned of Ashley’s case, he understood the parents’ decision.
"In this case, being short is a benefit to the child," Wilfond told NBC affiliate KING-TV of Seattle. "There are other parents that make decisions to make their children taller because that may be a benefit to the child. And so I think what all these cases have in common is an intention to help the child."
Comfort and convenience cited
Ashley’s parents say keeping her small will help reduce risks for bedsores and other conditions that can afflict bedridden patients. Also, they say preventing her from going through puberty means she won’t experience the discomfort of having periods or growing breasts that might develop breast cancer, which runs in the family.
“Even though caring for Ashley involves hard and continual work, she is a blessing and not a burden,” her parents’ blog says. Still, they wrote, “Unless you are living the experience ... you have no clue what it is like to be the bedridden child or their caregivers.”
Deborah Feldman of KING-TV contributed to this report.
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