Frozen in time: the disabled nine-year-old girl who will remain a child all her life

[Al-khiyal]

· Parents fiercely criticised over 'offensive' surgery

· Disability groups say case raises troubling issues

Ashley's parents call her their Pillow Angel, a moniker that is a reference to the love and joy they feel for their nine-year-old daughter and the severe disabilities she has suffered from birth. She cannot sit up, walk or talk, is fed by tube, and, as her parents put it, "stays right where we place her - usually on a pillow".

Ashley won't know this, as she is brain-damaged and has the awareness, her doctors say, of a baby, but she has become the subject of a passionate argument in disability circles and beyond. Her name is becoming synonymous with the debate about the acceptable limits of medical intervention in the care of disabled people.

The cause of the controversy is the "Ashley Treatment" - a course of surgery and hormone supplements devised for her at her parents' request and with the blessing of doctors - that will for ever keep her small. It involves surgical operations, including a hysterectomy, and hormone prescriptions that will, in effect, freeze-frame her body at its current size.

Although she has a normal life expectancy, she will, physically, always be nine years old. Her growth has been suspended at 4ft 5in (1.3 metres), rather than the 5ft 6in she would probably otherwise have become. Her weight will stick at around 75lb (34kg) rather than 125lb.

This week Ashley's parents, who have chosen to remain anonymous and have only let it be known that they are "college-educated professionals" living in Washington state, have posted on the internet a lengthy explanation of their desire to stunt her growth. It is the first time they have given a public account of their actions. The explanation is accompanied by a gallery of photographs showing Ashley over the years, from her as a smiling baby a few months old, through to today when she is seen nestled in a sheepskin rug.

She was diagnosed, they explain, with brain damage with unknown causes just after birth and has remained at the same developmental level since about three months. Three years ago she began to show early signs of puberty, and they grew anxious about the impact of fertility and of her rapidly increasing size and weight on the quality of her life. In discussions with doctors at Seattle Children's hospital they devised the treatment: removal of Ashley's uterus to prevent fertility, excision of early buds on her chest so that she would not develop breasts, and medication with high doses of oestrogen to limit her growth by prematurely fusing the growth plates of her bones.

The parents insist that the treatment, carried out in 2004, was conceived for Ashley's benefit and not their own ease or convenience. With a lighter body and no breasts, Ashley will have fewer bed sores and lie more comfortably. And a smaller Ashley can be cared for and carried. "As a result we will continue to delight in holding her in our arms and Ashley will be moved and taken on trips more frequently instead of lying in her bed staring at TV or the ceiling all day long," they write.

But as news about the treatment became known, Ashley's parents were surprised by the virulence of some of the response. Comments on chatboards have included: "Ouch - this smacks of eugenics"; "I find this offensive, truly a milestone in our convenience society"; "This smells, I can't agree with this".

Outrage has also been expressed by organisations representing disabled people across the US, with many asking why a course of treatment that would not be countenanced for an able-bodied person should be allowed in this case. "People have been horrified by the discrepancy," said Mary Johnson, editor of Ragged Edge, an online magazine for disability activists.

She said she felt for Ashley's parents and could understand why they had made the decision. But she feared that the treatment would open a Pandora's box that could have adverse effects for other children. "What will now be said in the case of a child with spina bifida, who you could argue has the same physical challenges but whose brain is fully functioning? This is very troubling."

Debate has raged among doctors and medical ethicists. Jeffrey Brosco of Miami University has co-written an editorial in the Archives of Pediatrics & Adolescent Medicine criticising the procedure as an experiment without proper research controls. "This is a technological solution to a social problem. I work with severely disabled children and know how hard it is on families, but what we need most is better federal funding so that they can be cared for properly."

State help for caring for disabled people is available through Medicaid, which is restricted to poor families. Ashley's parents would not qualify, and say it is impossible to find carers they can afford.

The ethical row is likely to deepen as the Seattle doctors, led by Daniel Gunther, say they are considering other children for similar treatment, though only after monitoring by the hospital's ethics committee. The doctors accept that Ashley's hysterectomy was contentious, given the dark history of sterilisation of disabled people in Europe and America, and that there were risks involved in the operations and oestrogen doses.

But they argue the benefits outweigh the risks. Ashley has, they admit, been "infantilised" but question the harm that would do a person whose mental capacity "will always be that of a young child".

Ashley cannot say what she thinks. But in a telephone interview with the Guardian last night, her father said that many people had assumed he and his wife had to agonise over their decision.

"We didn't. It was easy," he said. "We clearly saw the benefits to Ashley's quality of life. We have also been criticised for harming Ashley's dignity. But for us, what would be grotesque would be to allow a fully formed woman to grow up, lying helplessly and with the mentality of a three-month-old."

Hormones

There is a long history of hormones being used to control growth in children. In some cases they are used to counteract a hormonal imbalance or genetic disorder. But there have also been sustained attempts to control body size for cosmetic reasons.

In 1956 MA Goldzieher became the first to report using high doses of oestrogen to treat exceptionally tall girls. Over ensuing years thousands of tall girls were prescribed oestrogen to prevent them tipping over the 6ft mark, protecting their marriage prospects. As the stigma against tallness in women has declined, so has the practice, though it still continues.

Boys considered to be shorter than the norm have recently begun to be treated with a growth hormone, often for cosmetic reasons. US federal restrictions have been loosened, allowing private paediatricians to offer the treatment that can cost up to $40,000 a year.

Frozen in time: the disabled nine-year-old girl who will remain a child all her life

[Al-khiyal]

Ashley's story

[Al-khiyal]

No two situations are the same. Our situation is similar in the sense that it was a normal pregnancy and birth and that we didn't know there was anything amiss until our daughter, Eleanor, who's 17 next week, was about six months old, and we noticed that she wasn't reaching normal milestones. It all unfolded quite slowly.

The significant difference [between us and Ashley's family] is that our daughter is mobile - she's able to walk, or get in to the bath, and feed herself - but she can't speak. She's still in diapers, so we have to deal with that. You don't expect to still be changing nappies when your child is 16 or 17, but it can be done.

It's tricky to assign developmental ages, but mentally Eleanor's about a year old, and we don't expect her skills to develop any further. A question I would ask Ashley's family is: "Have you considered whether how she is at nine will really be how she will be at, say, 17?" Nobody would say my daughter is the same person now that she was at nine. She's more assertive, she's got a bit of a sense of humour - there are all kinds of things like that, which make you wonder about artificially interfering with development: the assumption seems to be that because she has never changed, she won't change, and I wouldn't rely 100% on that. Who knows how somebody lives in their own body?

Having a disabled child does put a lot of stresses on the family. Somebody has to be there the whole time. There's very little scope in your life for doing anything impulsive. You can still have a social life, but you have to plan for it in a way that you wouldn't normally. Equally, it's quite hard to take our daughter out.

In our case it was particularly difficult to do what both of us wanted to do, which was to continue working. I went part time for a while when both Eleanor and her elder sister were small, but I've never stopped working. All the professionals involved with our daughter have always assumed that there will always be at least one parent at home, which we have found difficult. I think the fact that both of us work in responsible jobs - I am corporate change manager at Oxfordshire county council, and my husband is chief editor of the Oxford English Dictionary - is important for our own sense of who we are. You don't want to be defined as just the parent of a disabled child. I've never felt guilty about that decision. I don't think guilt is a very helpful emotion under the circumstances. I know that many parents split up. You're almost the exception if your marriage survives, as ours has.

There is always the danger that you can turn yourself into a kind of martyr, or a victim, and we have very consciously tried to avoid doing that. You come across parents whose whole lives have been consumed by their child's disability. It's very easy to be marginalised, and you have to guard against it. I often have to decide at what point to tell somebody that I have a child who's severely disabled, because it alters their perception of you, at least temporarily.

I probably overcompensate for it in some ways, and I definitely pick and choose who and how much I tell.

My first instinct when I heard what Ashley's family had done was to think, that's not something I would do. I never considered it as an option, I wasn't offered it, and I'm not even sure it would be legal in this country. We recently raised, with one of our daughter's doctors, the issue of whether she should be protected by contraception - not necessarily now, but she is coming up to 17 and she will inevitably be mixing with other young people, and as Ashley's parents point out, people with disabilities can be abused - you would hope that it would never happen, but it can. But even to get contraception, an implant or something like that, for somebody who can't give consent, is an extraordinarily complex procedure.

When Ashley is older, legally an adult, her parents will not have the same kinds of rights over her as they have now. Also, it looks as though she has a normal life expectancy. When she's 50 (in a nine-year-old body, I think that's why people find it spooky), who's going to look after her? This is a solution for the next few years, maybe, but is it really a proper long-term solution? I don't know. It's very hard to say. It's hard to put yourself in someone else's place.

I'm really loath to criticise, because unless you've been there, or even if you have, nobody can tell what it's like on a day-to-day basis for that particular family, and I'm a bit wary that this story could set parents of disabled children against each other. I think we need to hang in there together, because what this story shows is that none of us actually gets very much in the way of support. It says that if you've got a disabled child, every family's for themselves. And clearly these people have found their own solution, and it's quite an extreme one.

I think you do have to accept that your disabled child is a whole person who is going to grow up. And I would rather see resources concentrated on dealing with the reality of it, and the truth is that there aren't that many, wherever you live.

'Unless you've been there, it's very hard to judge'

[Bent_Bladi]

Who will take care of her after her parents die...?

[Al-khiyal]

David is a young man with severe cerebral palsy. He can't walk, he can't talk, he can't sit up by himself, but he can blog. This week, David blogged about Ashley.

"Ashley's parents have committed the ultimate betrayal," he writes. "They have treated their daughter as less than human, not worthy of dignity.... What strikes me about 'the Ashley treatment' and has brought me to tears is that the very people in all of society whom this child should trust have betrayed her."

Everyone on the Internet, it seems, has an opinion about what Ashley's parents did to her. Ashley, 9, has a condition called static encephalopathy, which means an unchanging brain injury of unknown origin. She's in a permanent infant-like state - can't hold her head up, speak or roll over on her own.

When Ashley was 6 years old, her parents and doctors agreed to have her uterus and breast buds removed so she'll never reach puberty. She was given estrogen treatments and will never be more than 4 feet 5 inches and 75 pounds. Like the Terri Schaivo story before her, Ashley and her story have a lot to say about what it means to be disabled, what it means to be different and what it means to be human.

Feminist groups and disability activists protested Thursday in front of the American Medical Association headquarters in Chicago, demanding that the AMA officially condemn Ashley's doctors for performing the procedures.

Ashley's parents speak publicly only through their blog. On it, they explain why they did what they did: Ashley will be more comfortable at a smaller size; large breasts would have made lying down difficult; it will be easier to include her in family gatherings if she is lighter and easier to carry around.

Some of the most vociferous critics of what Ashley's parents call "the Ashley treatment" have been other parents of disabled children.

"My son is 11....doesn't walk, doesn't talk, etc., etc." writes one mom. "He's hard to carry. He's not going to get easier to carry.... And still, I don't understand. I don't understand removing healthy tissue and functioning organs.... Growing is not a sin or a disease - it's what kids' bodies do, even disabled bodies."

"Don't get me wrong - caring for a 5 feet something, 110-plus pound adult with physical disabilities is no walk in the park," blogs another mom. "I've got the trashed lumbar discs to prove that. But I am truly just sick to my stomach to imagine that it's acceptable medical practice in any case to surgically stunt a child's growth.... Using their logic, why not just perform quadruple amputations? I mean, really, she's not going to use her arms and legs."

Many others have been supportive of Ashley's doctors and parents. On CNN.com, for example, one person wrote, "No one objects to surgery to remove a cancer or hormone treatments to treat a variety of ailments. No one objects to pain medication for palliative care. Why would anyone object to surgery or hormones to improve the quality of life and care for a severely mentally disabled child?"

In the end, as in the Schiavo case, it comes down to who speaks for Ashley, a girl who cannot speak for herself. A CNN.com reader who is supportive of Ashley's parents wrote: "Nobody is stopping to think how a little girl with the mentality of an infant would treat bodily processes such as puberty and menstruation - a process that scares even the most normal of our children."

But others think they're in a position to understand what Ashley wants. "Ashley is human. I am human," writes David on his blog. "Ashley is me. I am Ashley. And you are Ashley, too."

Disability community decries 'Ashley treatment'