Pillow angel; what a sweet endearment. But unfortunately, the pillow angel has had more than her fair share of controversy and bitter battles.
Many of you have probably heard about this case as it's been quite popular in the news. 9 year old Ashley has static encephalopathy.
Static encephalopathy, as defined by Easter Seals is, "permanent or unchanging brain damage. The effects on development depend on the part of the brain involved and on the severity of the damage. Developmental problems may include any of a range of disabilities such as cerebral palsy, learning disabilities, mental retardation, autism, PDD, speech delays, attention deficits, hearing & vision impairments, oral motor problems, etc" (Easter Seals).
According to Ashley's doctors, she is an infant in a 9 year old child's body.
"She would never talk, never walk, and was dependent on her parents to meet all her needs. Her cognitive function was the equivalent of that of an infant, unlikely to ever change" (CNN, 2007).
In 2004, her parents decided to have the doctors perform a hysterectomy on Ashley to stunt her growth and sexual development. Today, it was announced by a group charged with reviewing the case, that the procedure violated the constitutional rights of the girl.
"NEW YORK (CNN) -- A hospital that performed a controversial procedure that stunted the growth and sexual development of a profoundly disabled child violated Washington state law by sterilizing her, according to an investigative report released Tuesday.
The case has raised medical ethics questions and rankled disability and feminist groups.
The Washington Protection and Advocacy System, a private group vested with federal investigative authority for people with disabilities, found that Seattle Children's Hospital and Regional Medical Center violated the constitutional and common law rights of a girl identified only as Ashley by performing a hysterectomy without a court order from the state" (CNN, 2007).
On one hand, this child is not going to get better. She will never have a "normal" life. Her body would have continued to develop, she would have went through the cycles all women know and love, but she would have no conversations with her peers, no high school or college graduation, no marriage, no children. She would have been an infant in a woman's body with a woman's problems.
But, on the other hand, this little girl will someday be a woman trapped in a child's body. She will never know the difference... but does that make it right?
Quite honestly, I'm not sure how I feel about this. I can understand why her parents opted to take this route. Being completely responsible for every aspect of a family members care can be challenging. And those challenges become even harder as that family member grows. By opting for this surgery, the family ensured that the changing needs of Ashley would not mean putting her in a long term care facility, but would instead allow them to keep her at home and able to go on family outing even if she never enjoys them.
At the same time, however, I can understand the outrage that this case brought forth. Is it okay for us to keep a child from growing simply because it's easier or more convenient? That one is not so easy to answer and brings forth so many ethical considerations a massive tangle ensues.
However, the one consideration that has provoked my thoughts today is, who decides when a procedure such as this is acceptable?
The family? The doctors? The state? According to recent developments in Ashley's case, it is the state's right. That, I can't fully agree with. The state should not be the one making the decisions as for what is best medically for a child. That decision should be up to the family and the doctors, but even that is putting a complex issue in too simplistic terms.
With Ashley's case, the doctors convened a 40 member ethics panel that became familiar with the case and then voted to allow the procedure. According to the Washington Protection and Advocacy System report, however, that wasn't enough. They should have gotten a court order first. I can't help but ask why.
The state does not know what is best for that child. The doctors that treat her, the family that cares for her and the panel of doctors that examined the case would know best. But wait, Ashley can't speak for herself... does that make a difference? Does the state have the final say as a third party?
Like I said, this is an issue full of twists and turns. In the end, I have no answers and couldn't even say what I would do if it were my child.
But I can say, I sympathize with the family for all the hell they have gone through since their story hit the spotlight. By all accounts, Ashley has very devoted and wonderful parents but try telling that to those that have castigated them as being evil for making the decision they did and there will be hell to pay.
References:
http://www.cnn.com/2007/HEALTH/05/08/ashley.ruling/index.html
"At the same time, however, I can understand the outrage that this case brought forth. Is it okay for us to keep a child from growing simply because it's easier or more convenient?"
I don't necessarily think it's a case of ease or convenience. I think the parents' decision is a far more humane approach than allowing her to develop physically into a woman with the mind of an infant. Personally if I had the mind of a child, I'd like a body to match, I would view it as cruel if somebody allowed me to develop into a grown man. I'm just putting myself in the child's shoes.
In my own shoes, if I had an accident tomorrow that rendered my mind to a state of infancy I would opt for euthanasia, but I wouldn't be allowed that mercy, as it is deemed more 'ethical' to keep me alive against my will. Funny really that my inability to scream out for a merciful and dignified death would be exploited by people to suit their own ends. No doubt my parents would be painted up as monsters just looking to offload their burden in such a scenario. Some bunch of supposed do-gooders would be rallying around me fighting for my right to suffer, and their right to humiliate my family because they've got nothing better to do with their time than philosphize from the sidelines.
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I am the people my mother warned me about.
the state does not need to play any role in this issue.
To depict these parents,
faced with an undoubtedly terrible and difficult decision,
as violators of their child's rights is a travesty.
The only people who should be present in the moral decision,
are the parents.
The panel of doctors is an adequate source,
for the analyzing the medical issues.
In this case,
What is this third party "private group" protecting?