Debate rages regarding the ethics of a Seattle family
who opted to have radical surgery and estrogen treatments performed on
their daughter in order to purposely stunt her growth. Ashley X.
was born with a condition called static encephalopathy, a severe insult
to the brain causing this otherwise normally-developing girl to
be unable to move her body to sit up, roll, or hold her head up, let
alone walk. Although she has few medical issues other than those
otherwise expected for people who are continually bedridden, Ashley is
severely mentally retarded.
The Ashley Treatment,
as the controversial combined hormonal and procedural concoction has
been dubbed, started in 2004 when the then 6-year-old began to show signs
of precocious puberty. The family then opted for a complete
hysterectomy, removal of the breast buds, an appendectomy, and
aggressive estrogen treatment to advance the onset of puberty in an odd
reaction that will likely keep Ashley at her present size of 4'5" and
about 65 lbs.
Protesting that this radical treatment will enhance
Ashley's quality of life, the family cares for her at their home with
their two younger children. Ashley rides a bus to her
special-needs classroom where she enjoys social activities.
Ashley's small size will purportedly allow her to be lifted by a single
person instead of involving a complex system of ropes and pulleys and
should also cut down in the likelihood of common maladies for a person
in her condition such as skin sores, bladder infections, and pneumonia.
Ashley's family apparently went through a complex decision-making process, employing the
opinions of doctors
before making these radical choices on the behalf of a person who
cannot choose for herself. I am glad that the "special" needs of
my son (with Down syndrome) are mild by comparison, so that such a
decision will unlikely be in the cards for me. Still, I find
myself on both sides of the ethics fence here. When is it okay to
employ such radical methods (if ever), and who decides when the person involved cannot decide for themself?
