Right Wing Nut House

Her name is Ashley. She’s 9 years old and weighs only 90 pounds. Her parents, hoping to keep their severely disabled “pillow angel” tiny so that it is easier to care for her, elected to have radical surgery performed that will stunt Ashley’s growth and prevent her from reaching a normal puberty:

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.

The case has captured attention nationwide and abroad via the Internet, with some decrying the parents’ actions as perverse and akin to eugenics. Some ethicists question the parents’ claim that the drastic treatment will benefit their daughter and allow them to continue caring for her at home.

University of Pennsylvania ethicist Art Caplan said the case is troubling and reflects “slippery slope” thinking among parents who believe “the way to deal with my kid with permanent behavioral problems is to put them into permanent childhood.”

Not all doctors and ethicists agree:

Dr. Douglas Diekema, an ethicist at Children’s Hospital and Regional Medical Center in Seattle, where Ashley was treated, said he met with the parents and became convinced they were motivated by love and the girl’s best interests.

Diekema said he was mainly concerned with making sure the little girl would actually benefit and not suffer any harm from the treatment. She did not, and is doing well, he said.

“The more her parents can be touching her and caring for her … and involving her in family activities, the better for her,” he said. “The parents’ argument was, `If she’s smaller and lighter, we will be able to do that for a longer period of time.”‘

Reading the parent’s blog, I am also convinced they did this out of love. And one look at the pictures on their site will convince anyone that the child is happy, healthy, well nourished, and well cared for.

Still, the parent’s desire to “manage” Ashley’s care via surgery raises troubling ethical questions:

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…”

An editorial in the medical journal called “the Ashley treatment” ill-advised and questioned whether it will even work. But her parents say it has succeeded so far.

No one should sit in judgement on the parents of this little one unless you’ve walked a mile in their shoes. Dr. Frader makes an excellent point about the gap between home care and institutionalizing someone like Ashley. In most cases, parents cannot handle the burden and must give their child over to the state to be cared for (private institutions are astronomically expensive and very few insurance plans today cover them). And while many insurance plans will partially cover bringing in an outside caregiver, that too can end up being more than almost anyone can afford over the life of someone like Ashley.

The parent’s solution solution sounds drastic - perhaps even a little bizarre - but the important thing is that the surgery has allowed them to keep their daughter at home. They explain it this way:

“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.

Also, Ashley’s parents say keeping her small will reduce the risk of bedsores and other conditions that can afflict bedridden patients. In addition, they say preventing her from going through puberty means she won’t experience the discomfort of periods or grow breasts that might develop breast cancer, which runs in the family.

The parents are obviously sincere but their explanation dances around the ethical dilemma that has some doctors and ethicists worried; that the surgery was not done necessarily for Ashley’s benefit but rather to ease the burden of the parents as well.

Ethical questions like this will only become more commonplace as new treatments and procedures are developed that will challenge the way we think about the severely disabled and the care they require and deserve. Would we feel the same way and view the parents in the same light if say, they had asked a doctor to amputate Ashley’s legs or perform some other kind of grotesque procedure that would have accomplished a similar purpose? Of course, it is doubtful any reputable doctor would have performed such a surgery but it does raise the haunting question of how far we are willing to go in accommodating parents in caring for a severely disabled child.

We live in an age where the miraculous in medicine is commonplace. We are rapidly approaching a time when even more wondrous advances in medical knowledge and technology will almost seem magical. And along with the magic will come the question that dogs ethicists with every major medical advancement: Just because we can do it, should it be done?

In literature, Mary Shelley illustrated the question brilliantly with Dr. Frankenstein’s creation, a warning that playing God has unforeseen consequences but also the very salient notion that with scientific advancement comes a responsibility to examine the underlying ethical considerations that attend all great discoveries. As we rush pell mell into the future, I feel at times that we are in danger of leaving behind a bit of our humanity in order to be first, or to be more innovative, or simply to demonstrate our capacity to amaze ourselves. And as our knowledge grows, so will the difficulty in resolving the ethical questions that inevitably arise from that knowledge.

There will be more disagreement among ethicists in the future as the line between what is right and what is possible grows ever more difficult to resolve. Let’s hope that our ability to decide such questions never fails to outstrip our capacity to glimpse the right course of action consistent with our values and our humanity.

UPDATE

If you want some intelligent analysis on how the surgery has affected Ashley and to get the perspective of a medical professional who deals daily with the severely disabled, you can do no better than visit my blog bud Raven’s site And Rightly So.

. She has been following the story for a while and has much more background on the case.