Observations THE WEEK IN MEDICINE

Ashley X: a difficult moral choice

BMJ 2007; 334 doi: https://doi.org/10.1136/bmj.39091.555856.B7 (Published 11 January 2007) Cite this as: BMJ 2007;334:72
  1. Rebecca Coombes, journalist, London rcoombes@bmjgroup.com

    Did the doctors and parents responsible for a severely disabled girl have the right to keep her small?

    What's the story?

    Until New Year's Day, Ashley X was simply the anonymous child at the heart of a family case history published in an American medical journal.

    The 9 year old girl has static encephalopathy and is an infant state, cannot sit up, roll over, hold an object, walk, or talk. In a radical move, she has been receiving growth attenuation treatment for the past three years designed to keep her the size of a 6 year old, through high dose oestrogen.

    The goal was to improve Ashley's quality of life and make it easier for her parents to care for her at home. More controversially, the girl also had a hysterectomy to eliminate the menstrual cycle and associated cramps, and breast bud removal to avoid the development of large breasts.

    How did the story break?

    Ashley's case history was published in October's Archives of Pediatrics and Adolescent Medicine (Arch Pediatr Adolesc Med 2006;160:1013-7). It did more than just stir up ethical debate in the medical community—it sparked global publicity. “Eugenics,” “mutilation,” “Frankenstein-esque” were some of the criticisms it set off.

    It motivated Ashley's parents, a professional couple from Seattle, to go public, naming their daughter and posting family photographs on a blog on 1 January.

    The blog (http://ashleytreatment,spaces.live.com/blog) took a million hits in the first 48 hours, topped the health section of Google News for several days, and has generated more than 400 press articles worldwide.

    The parents have declined all media requests for an interview, choosing instead to explain their choices through their blog. Her father did speak to the Los Angeles Times last week: “I cannot explain something this complicated in an interview. People think it must have been a horribly difficult decision to have the treatment performed. It really wasn't.”

    Ashley is expected to stay at about 4 feet 5 inches all her life and to continue to weigh 75 pounds. Her parents' actions were only motivated by a desire to improve her quality of life, they say. “Ashley's smaller and lighter size make it more possible to include her in family life. We will continue to delight in holding her in our arms. [She] will be taken on trips more frequently and social gatherings instead of lying down in her bedroom and staring at the TV (or ceiling) all day long,” the blog reads.

    How the press covered Ashley's story?

    At US magazine Time, journalist Nancy Gibbs spoke to Dr Daniel Gunther and Dr Douglas Diekema, the doctors involved in Ashley's treatment. “Talk to them, and you confront every modern challenge in weighing what medicine can do, versus what it can't,” she wrote.

    Dr Diekema, who chairs the bioethics committee of the American Academy of Pediatrics, was brought in to consult on the case. He told Time: “This was something people hadn't thought about being a possibility, much less being done.” Speaking of the ethics committee of the Seattle Children's Hospital, he said: “It took time to get past the initial response—‘Wow, this is bizarre'—and think seriously about the reasons for the parents' request.”

    Gunther and Diekema's first concern was to make sure there would be no medical harm, they told Gibbs. Removing breast buds is less invasive than a mastectomy. Hormone treatment had been routinely used on too tall teenage girls in the 1950s and 1960s. The main concern was assessing the risk of thrombosis or blood clot for Ashley because no one that young had been treated with oestrogen before. There are few reports of thrombosis in teenage patients. “After the treatment is finished, I don't see any long term risk, and we've eliminated the risk of uterine and breast cancer,” said Dr Gunther.

    The benefits are not just social, but also medical, said Dr Gunther, as more movement gives better circulation, digestion, and muscle condition, and fewer bed sores.

    But in the Washington Post, Dr Joel Frader, medical ethicist at Chicago's Children's Memorial Hospital, wrote: “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. As a society we do a pretty rotten job of helping caregivers provide what's necessary for these patients.”

    Arthur Caplan, University of Pennsylvania ethicist and columnist for the MetroWest Daily News, Boston, agreed in an article titled “Is Peter Pan treatment a moral choice?”

    “Keeping Ashley small is a pharmacological solution for social failure—the fact that American society does not do what it should to help severely disabled children and their families. Permanently freezing a person into childhood is not the answer.”

    Tom Shakespeare, of the Policy, Ethics, and Life Sciences Research Institute in Newcastle, who has achondroplasia, wrote on Ouch!, the BBCi site for disabled people, that he was not impressed.

    In a tone heavy with sarcasm, he said: “Simple solution, say the doctors. Just keep her child sized. Pump her full of hormones, whip out her uterus, and there you have it. No more growth. One convenient, lightweight and portable family member, ideal for every home.”

    Some families facing similar problems were in favour of “The Ashley Treatment,” pointing out the high number of severely disabled children in residential or foster care. “Having an 18 year old disabled daughter who weights 220lbs is no picnic and involves some skilful wrestling moves,” wrote one parent. “Please don't judge until you've tried wrestling a 220lbs child out of the bathtub,” said another.

    Mary Riddell, in the Observer, pointed out that the story had not, as some claim, prompted a “worldwide controversy.” “But the fuss has actually been rather slight by the screechy standards of debates on human engineering.”

    In the Telegraph, Professor Raanan Gillon, emeritus professor of medical ethics at Imperial College, London, was prepared to be convinced. “I was quite shocked when I first heard about it. It seemed a straightforward case of child abuse. But when I looked into it, I changed my mind and think there is indeed a case to be made for what has happened to this girl. But I am slightly surprised it didn't go to court. An additional layer of checks and balances is desirable for something so contentious.”

    What next?

    At least four sets of parents would reportedly like the “Ashley Treatment” for their disabled child. US media organisations have also taken appeals from parents.

    Dr Jeffrey Brosco, from the Department of Pediatrics, University of Miami—in an editorial in the same issue of the journal in which Ashley's case history was published—was sceptical about the treatment, and whether it would even work. “While there are data that high dose estrogen treatment will make tall for age girls shorter as adults, this effect may be different in children with severe disabilities. More needs to be known,” he said.

    Yet he adds, “American society is fairly accepting—even encouraging—of other forms of medical therapy that seek to enhance one's existence. If in the pursuit of a more perfect appearance, adults and even teenagers can readily enlist plastic surgeons to fix or augment breasts, then perhaps we should be more circumspect about decrying the treatment proposed by Gunther and Diekema.”

    View Abstract

    Log in

    Log in through your institution

    Subscribe

    * For online subscription