Chris Ayres
London
Times
Thursday, January 4, 2007
Her name is Ashley X, and she is the little girl who will never
grow up.
Until New Year’s Day, not even her first name was known.
Ashley was a faceless case study, cited in a paper by two doctors
at Seattle Children’s Hospital as they outlined a treatment
so radical that it brought with it allegations of “eugenics”,
of creating a 21st-century Frankenstein’s monster, of maiming
a child for the sake of convenience.
The reason for the controversy is this: three years ago, when
Ashley began to display early signs of puberty, her parents instructed
doctors to remove her uterus, appendix and still-forming breasts,
then treat her with high doses of oestrogen to stunt her growth.
In other words, Ashley was sterilised and frozen in time, for
ever to remain a child. She was only 6.
Ashley, the daughter of two professionals in the Seattle area,
never had much hope of a normal life.
Afflicted with a severe brain impairment known as static encephalopathy,
she cannot walk, talk, keep her head up in bed or even swallow
food. Her parents argued that “keeping her small”
was the best way to improve the quality of her life, not to make
life more convenient for them.
Because of her small size, the parents say, Ashley will receive
more care from people who will be able to carry her: “Ashley
will be moved and taken on trips more frequently and will have
more exposure to activities and social gatherings ... instead
of lying down in her bed staring at TV all day long.”
By remaining a child, they say, Ashley will have a better chance
of avoiding everything from bed sores to pneumonia — and
the removal of her uterus means that she will never have a menstrual
cycle or risk developing uterine cancer.
Because Ashley was expected to have a large chest size, her parents
say that removing her breast buds, including the milk glands (while
keeping the nipples intact), will save her further discomfort
while avoiding fibrocystic growth and breast cancer.
They also feared that large breasts could put Ashley at risk
of sexual assault.
The case was approved by the hospital’s ethics committee
in 2004, which agreed that because Ashley could never reproduce
voluntarily she was not being subjected to forced sterilisation,
a form of racial cleansing promoted in the 1920s and known as
eugenics (it was satirised in F. Scott Fitzgerald’s novel
The Great Gatsby). However, the case of Ashley X was not made
public, and, as a result, no legal challenges were ever made.
Ashley’s doctors, Daniel Gunther and Douglas Diekema, wrote
in their paper for the October issue of the Archives of Pediatrics
and Adolescent Medicine that the treatment would “remove
one of the major obstacles to family care and might extend the
time that parents with the ability, resources and inclination
to care for their child at home might be able to do so”.
The paper inspired hundreds of postings on the internet: many
supportive, others furious. “I find this offensive if not
perverse,” read one. “Truly a milestone in our convenience-minded
society.”
It was the critical comments that finally provoked Ashley’s
father to respond.
While remaining anonymous, he posted a remarkable 9,000-word
blog entry at 11pm on New Year’s Day, justifying his decision.
The posting includes links to photographs of Ashley, in which the
faces of other family members, including Ashley’s younger
sister and brother, have been blanked out. “Some question
how God might view this treatment,” he wrote. “The God
we know wants Ashley to have a good quality of life and wants her
parents to be diligent about using every resource at their disposal
. . . to maximise her quality of life.”
Ashley’s father went on to describe how her height is now
expected to remain at about 4ft 5in (1.3m), and her weight at 75lb
(34kg). Without the treatment, she would have grown into a woman
of average height and weight, probably about 5ft 6in and 125lb,
with a normal lifespan.
The medical profession is divided. “I think most people,
when they hear of this, would say this is just plain wrong,”
wrote Jeffrey Brosco. of the University of Miami, in an editorial.
“But it is a complicated story . . . (But) high-dose oestrogen
therapy to prevent out-of-home placement simply creates a new
Sophie’s Choice for parents to confront.
“If we as a society want to revise the nature of the harrowing
predicament that these parents face, then more funds for home-based
services, not more medication, is what is called for.”
George Dvorsky, a director of the Institute for Ethics and Emerging
Technologies, countered: “If the concern has something to
do with the girl’s dignity being violated, then I have to
protest by arguing that the girl lacks the cognitive capacity
to experience any sense of indignity.”
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