Fresh perspectives on today’s news by: Whymrhymer
When parents are faced with a tragedy such as a child born with an incurable medical condition, they can stand up and deal with it the best way they can figure out how to deal with it, or they can turn it (the problem and the child) over to the state to deal with. This is a story of parents who ‘stood up.’
Ashley (last name unknown) was born with a rare brain disease called static encephalopathy; in plain English, mentally and developmentally, Ashley will never leave infancy. Physically however, Ashley’s body could have developed as all children’s bodies develop, right into and through adolescence and into adulthood. With the help of their doctors, Ashley’s parents came to understand the ramifications of this (a full-grown adult female with the mind of an infant) and determined a course of action . . . Ashley would, through a course of operations (a hysterectomy and breast tissue removal) and medication (estrogen hormone treatments) not grow into that full-grown adult.
The decision was made not, Ashley’s parents have said, solely to make it easier to care for her (although that is, in fact, an important consideration), it was also made to save her from the physical changes and physical discomfort that take place as a child grows to adulthood, changes that her infant mind could not possible comprehend — changes that would almost certainly have had a negative effect. So Ashley is an infant in a six-year old body (chronologically she is nine-years-old) who will grow very, very slowly, if at all. She will be cared for, loved and nurtured by two parents who have her best interests in mind. To my mind that is as happy an ending as is possible under the circumstances.
Unfortunately the story does not end there. Two of the doctors involved in Ashley’s transformation to her present condition felt the need to publish the case study in a medical journal (ethically, they really had no choice but to publish) — from there the media and the public got hold of the story and now many hysterical accusations are being leveled against the doctors, the parents, the hospital and anyone who supports the unusual resolution to Ashley’s situation.
On January 1st of this year, Ashley’s parents started a blog to defend themselves. This was completely unnecessary since their identities have never been known to anyone outside the medical staff of the hospital where Ashley received her care. Nonetheless Ashley’s parents (whos identities are still not known) have decided to publicly defend their decision on their blog. This decision, unlike their decision about Ashley, is far less defensible. All they are doing at this point is soothing their own egos by formulating defenses to the thousands of negative and hostile comments that are sure to overwhelm their blog (assuming they allow comments — I have not looked at the blog but have linked the blog’s URL below).
My point is: at this stage, any debate is completely pointless. Neither Ashley’s disease nor her physical condition are reversible and the option the parents chose to resolve their (and Ashley’s) situation will be accepted by some and not by others. All their blog will do is, as I said, either help the parents “deal” with the situation or, another possibility, create some doubts in their minds — doubts that might have negative consequences for them and, more importantly, for Ashley.
UK Times Online: Parents defend decision to keep girl a child
Daily Telegraph, Australia: Disabled girl is frozen in time
Ashley’s Parents Blog: The “Ashley Treatment”, Towards a Better Quality of Life for “Pillow Angels”
From the blogosphere:
“Ultimate Truth”: “Pillow Angel” – The Radical Treatment of “Ashley X”
SportandNews: Parents of a severely disabled girl . . .