“Pillow Angel” or guinea pig?

The scientific briefing with Tom King

Surely the most hotly debated scientific issue of the past few weeks has been the case of Ashley X, the little girl who will, to all intents, never grow any older. Ashley is nine years old but suffers from a rare condition called staticencephalopathy, limiting the development of her mental and motor faculties to those of a three-month-old baby. This makes her completely reliant upon her parents for all movement, feeding and changing.

It’s a tragic story, but the thing that really marks Ashley out is that the severity of her condition and the lack of any prospect of improvement caused her parents to make the momentous decision to stop their “Pillow Angel” growing after her seventh birthday.

This was achieved first of all by a full hysterectomy, removing her uterus and ovaries to prevent her going through puberty and hence from ever menstruating. A drastic procedure was also carried out to remove her breast buds and an appendectomy was performed to rule out the risk of appendicitis later in life.As soon as Ashley had recovered from these surgeries the final stage of the treatment was enacted; high dose oestrogen injections over the course of the next two years causing her bones to fuse and meaning that her body will never grow past its current 5’4” or 75lbs.

Now I’m sure that for many of you your first reaction is, as mine was, one of horror and disgust at what seems like the grotesque maiming of a child, but, as one of Ashley’s doctors has said, we must “get past this feeling and examine what harm is actually being done to Ashley.” And indeed, upon closer examination, Ashley’s parents may well actually have some valid reasons for their actions. Though a hysterectomy is a shocking thing for a nine year old to go through, the fact is that it prevents menstruation and the attendant cramps and bleeding which could prove both painful and disturbing for Ashley if she can’t understand the cause of them. Yet while I agree that this is a good point, the same effect could have been achieved without removing her ovaries and thereby increasing her risks of osteoporosis and heart disease. Equally, the fact that she could remain childlike in appearance well into her thirties is a skin-crawling realisation. Ashley’s parents rationalise this with the claim that they struggle to lift her at her current weight so if she grew any larger they would be unable to cope alone, but surely for less than the cost of the treatment a hoist could be supplied to assist them?

Other modifications, such as the removal of her breasts and appendix are less clearly warranted. Ashley’s parents claim that she “has no need for developed breasts since she will never breastfeed” and that, as her bust is apparently likely to be large, they would only cause her discomfort and put her at risk of being ‘sexualised’ to any care-giver. This might be a convincing argument if they hadn’t stated that “other than her Mom and Dad, the only additional caregivers entrusted to Ashley’s care are her two grandmothers” and that they have ruled out additional careworkers as not being “qualified, trustworthy and affordable” enough. The appendectomy also seems like an ‘in for a penny, in for a pound’ type of job, as there is only a five per cent chance of Ashley developing appendicitis. Following this logic every child should have their appendix, tonsils and adenoids out as a matter of course as they may become infected. The reason that this doesn’t happen is that such operations are upsetting for the children and an unnecessary risk.

The main reason that the Ashley X treatment rankles with me is that she has no way of communicating her wishes. Therefore we simply must assume that her parents have thought through the risks properly and trust that their decision is in their daughter’s best interests. The difficulty with this is that almost every problem they give as a reason for the treatments could be solved by other, less extreme measures, so actions like her height restriction seem like they’ve been done for the parent’s convenience and not purely for the sake of Ashley’s well-being. India Knight in The Times also makes the interesting point that her parents may just feel more comfortable with her condition in someone with the appearance of a child that they would in a fully grown woman.

Regardless of their motivations, the publicity surrounding Ashley’s case, and the fact that it has been condoned by a medical ethics board (if not by a court of law) means that parents of other children with such disabilities may now see it as an option. British mum Alison Thorpe is now seeking a hysterectomy for her daughter Katy, even though at 14 Katy would be more likely to develop breast cancer as well as heart problems and brittle bones should the operation go ahead.

No-one who is not in such a position can understand the burdens placed upon the parents of severely disabled children but this should not be used to justify such extreme measures. In Ashley’s case the treatment may have been warranted but there is no room for shades of grey in deciding whether to apply these procedures to similar cases. A line must be drawn to ensure that Ashley’s story remains the exception, rather than the rule. After all, what happens if this is done to an individual who is aware of what is happening to them?

One comment

  1. I really enjoyed your article. I am totally blind, and passionate about equal opportunities for disabled people. I also feel that no-one can decide things like that about another person, however incapable they are at that time. I feel sick when I hear Ashley’s parents using the term “Pillow Angel” to describe their daughter, and Alison Thorpe on Radio 4 saying that Katy will never live a normal life. I know they think they’re doing the right thing, but they have to be stopped. Imagine if you or I found ourselves incapacitated. It’d be a scandal if something like that was done to us. Imagine if Ashley and Katy understood more than they appeared to. How distressing would that be for them? Children like Ashley and Katy and their parents need support from outside to help them find new growth and possibility not to stunt it, and it sounds like Ashley’s mum had ruled that out. I’m thinking of setting up some kind of pressure group, but I’m not sure how to do it and I need to gather support from people local to me before it can happen. Thank you for your research and clear arguments.