(This Opinion column ran on Nature’s news site on January 8, 2007. You can read the original post here.)

How far can a parent go in managing the life of their disabled child? Perhaps too far.

Shock. Even revulsion. These were the main reactions provoked by news stories about Ashley, a nine-year-old disabled girl who has been surgically and hormonally altered by her parents to forever stay the size of a small child. Is such treatment acceptable, asked the world’s press. On instinct, my immediate reaction was “no”.

But instinct isn’t always a good judge of sensitive ethical issues. So I learned more about the situation. The shock has now subsided. But my answer to the question of acceptability is still “no”, albeit for different reasons.

Keeping a child small to help her parents care for her is an untested medical solution to a societal problem — and one that could set a dangerous precedent.

Ashley cannot walk, talk, hold her head up or sit up by herself. Because of an irreversible developmental disability called static encephalopathy, she hasn’t developed mentally since she was three months of age and has to be fed with a tube.

Since 2004, doctors at Seattle Children’s Hospital have, at her parents’ request and with the approval of the hospital’s 40-member ethics board, removed Ashley’s uterus, appendix and breast buds (to keep her breasts from developing), and have given her high doses of oestrogen, which will keep her from growing any further.

As the doctors explain in an article published in October 2006¹, this is the first reported case of this ‘treatment’ for such a condition. They, and the parents, argue that the benefits far outweigh the risks.

But how do we know what the risks are?

Risk assessment

The benefits seem a bit easier to pin down. Having periods and developing breasts might be confusing and inconvenient, and potentially put Ashley at risk of sexual abuse. And the hysterectomy and breast-bud removal eliminates the risk of breast and uterine cancers. Daniel Gunther, the paediatric endocrinologist in the case, says being carried and moved more often will help Ashley’s circulation and cut down her risk of gastrointestinal complications and bed sores.

Without the treatments, Ashley was expected to reach up to 1.7 metres tall and weigh 57 kilograms. Her parents say they took this drastic step because they would not have been able to care for Ashley at that size. At her current size of 1.35 metres and 29 kilograms, they can still dress, bathe and move her easily. They are adamant that these treatments are not for their convenience but for Ashley’s quality of life.

They explained all this in a website that went online New Year’s day, where they also say that only parents with disabled children would be able to relate to their predicament.

No one disputes that this is a horrible situation for any parent. And judging by the many comments on websites that have covered Ashley’s story, parents in similar situations fully understand and defend the decision.

But what of the risks that come with this move? There is little evidence of the effects of this sort of treatment. Ashley’s parents note that in the 1950s and 60s, some adolescent girls who were likely to become very tall were given oestrogen to limit their height. There are some indications that this might have affected the girls’ fertility. This particular point is not relevant in Ashley’s case. But without rigorous follow-up, we can’t be sure that there were no other side effects.

Such drastic alteration of hormones is, in fact, quite likely to fiddle with other physiological factors. Does the high-dose oestrogen increase the risk of blood clots and stroke to unacceptable levels? Without proper investigation, we simply don’t know.

Home help

It’s true that a disabled child’s size can become a big problem for families. In the United States, government support for disabled children drops drastically when they reach adulthood and many families, unable to cope either financially or physically, are forced to send their children to institutions. In Florida alone, there are about 16,000 people on the waiting list for home services, according to Jeffrey Brosco, a paediatrician and ethicist at the University of Miami. That’s on top of the tens of thousands in that state who already receive help with home care.

But it is a fallacy that the only solution to this problem is drastic surgery, or trapping these children in a time warp that keeps them at a manageable size. Arthur Caplan, a bioethicist at the University of Pennsylvania in Philadelphia, points out that the government could (and should) provide wheelchairs and special bathtubs and home health assistance to families to help them care for these children.

There must be a lot more discussion between ethicists, endocrinologists and families before the treatment being tested on Ashley finds wider acceptance with the thousands of other parents who face similar problems.

Hard as it is to imagine, it’s possible that in 20 years, Ashley’s treatment will be common practice for disabled children. I just hope that before that happens, we will have enough information to be sure this is really the right choice.