8/8/2019 Big Issues From a Small Child
http://slidepdf.com/reader/full/big-issues-from-a-small-child 1/3
7/30/10 4:ig issues from a small child : Nature News
Page ttp://www.nature.com/news/2007/070108/full/news070108-1.html
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
8/8/2019 Big Issues From a Small Child
http://slidepdf.com/reader/full/big-issues-from-a-small-child 2/3
8/8/2019 Big Issues From a Small Child
http://slidepdf.com/reader/full/big-issues-from-a-small-child 3/3
7/30/10 4:ig issues from a small child : Nature News
Page ttp://www.nature.com/news/2007/070108/full/news070108-1.html
About NPGContact NPG
RSS web feeds
Help
Privacy policy Legal notice
Accessibility statement
Terms
Nature NewsNaturejobs
Nature Asia
Nature Education
About Nature NewsNature News Sitemap
Search: go
Nature ISSN 1744-7933 EISSN 1476-4687
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).
© 2010 Nature Publishing Group, a division of Macmillan Publishers Limited. AllRights Reserved.
partner of AGORA, HINARI, OARE, INASP, CrossRef and COUNTER
Recommended
