Parents Keep Disabled Girl Forever a Child

Parents of a severely brain-damaged child resorted to surgery to stunt her growth and keep her body forever child-like, in a decision some ethicists have condemned as discrimination and mutilation of a disabled person.

Know only as Ashley, the nine-year-old girl was found to be severely brain-damaged shortly after birth. In 2004, when she was six years old, Ashley underwent surgery at a Seattle hospital to prevent her from growing to a normal adult size and state of development, the Associated Press reported.

Claiming the decision was made for Ashley's benefit, her parents had her uterus and breast buds removed and her growth artificially halted through large doses of hormones.

"Ashley's smaller and light 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 on their blogsite, saying their daughter, whom they call their "pillow angel," is a blessing to their family and not a burden.

Her parents initially sought to limit Ashley's growth by hormone treatments, which accelerate bone maturity by causing the bone plates to fuse prematurely — at age nine, Ashley has the bones of a 15-year-old. The hormone treatments would accelerate menstruation and breast development as well. The parents decided to seek a hysterectomy, arguing that since Ashley would never bear children she had no use for a uterus.

The surgery to remove Ashley's breasts gave doctors the most ethical concern, her parents wrote — however, her parents convinced them that since Ashley would never breast feed an infant she had no need of her breasts, and the likelihood that she would have a large bust size would make her uncomfortable and lead to potential sexual assault.

"Furthermore, given Ashley's mental age a nine-and-a-half-year-old body is more appropriate and more dignified than a fully grown female body," her parents wrote. Their statement echoed the comments of George Dvorsky, a member of the Board of Directors for the Institute for Ethics and Emerging Technologies, who wrote in a related article, "The estrogen treatment is not what is grotesque here. Rather, it is the prospect of having a full-grown and fertile woman endowed with the mind of a baby."

Alex Schadenberg, executive director of the Euthanasia Prevention Coalition and the father of a disabled child, told that while he acknowledges the parents' love and concern for Ashley, nonetheless her surgery was morally wrong.

"What has been done to this young girl doesn't actually benefit her," Schadenberg said. "It is morally wrong to do surgery on someone when it isn't of benefit to them. It might have been of benefit to her caregivers but it's not actually of benefit to the child herself."

"It's really a mutilation of this child because she's disabled. We wouldn't do this to any body else."

Schadenberg said the surgery was an attack on Ashley‘s nature as a woman by denying her the ability to develop normally. "What we're saying is that as a disabled woman her body will have no need of natural hormonal balance, and in fact that's not true. So in fact we're mutilating her so it's easier to care for her, and in fact it's of no benefit and might be a serious problem for her.

"That's a discriminatory act and it dehumanizes that person to become an object instead of a person," Schadenberg said. "I understand that the parents do love their daughter and are caring for her, but the act itself is morally wrong."

Ashley currently 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.

On their site the parents advocate for the benefits of the "Ashley Treatment," explaining how it could be adapted to boys as well as girls. Multiple posts on the site from parents of disabled children expressed interest in the procedure to ease their own situations of difficult care.

The long tem health effects on young Ashley of having her uterus and breast buds removed and the application of large doses of hormones remains to be discovered.


Read the parents' blogsite "Ashley Treatment."

Read the article in the Archives of Pediatrics & Adolescent Medicine.

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