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Published online 8 January 2007 | Nature | doi:10.1038/news070108-1

Column

Big issues from a small child

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

Perhaps too far.

 Apoorva Mandavilli

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. Oninstinct, 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 societa

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 irreversibledevelopmental disability called static encephalopathy, she hasn't developed mentally since she wa

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 breas

buds (to keep her breasts from developing), and have given her high doses of oestrogen, which w

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

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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.

Visit our issuesfromasmall_child.html">newsblog to read and post comments abou

this story.

References

1. Gunther D.& Diekema D. Arch. Pediatr. Adolesc. Med., 160. 1013 - 1017 (2006).

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