Wrong?

I’m not sure how I feel about this, I read this story a few days ago and my first thought was “What the hell? I can’t believe they were allowed to do this?”.

Somewhere in the state of Washington, Ashley, and girl born with a brain impairment (Static encephalopathy) has been going through several procedures over the last two years aimed at keeping her small.

Ashley’s disease means she cannot walk, talk and has the developmental ability of an infant and she will never improve. She relies on her family to keep her fed through a tube, bathe her and care for her in every way.

About two years ago (when she was seven years old) her parents feared that as she grew they would not be able to continue her care at home if she were to grow at a normal rate and would become to big and heavy to lift and carry. So her parents approached doctors and asked if there was a way to keep her small.

Her parents convinced doctors that it was in her best interest to remain small.

Ashley was given a hysterectomy; her breast buds were removed and given a lengthy treatment of estrogen to permanently halt her growth.

Her parents are declining all interviews and it seems the only reason this story broke is that Ashley’s case has been written about in a medical journal (Archives of Pediatrics and Adolescent Medicine) and her parents posted to their blog. But on the parents website they stated, “We want to avoid sensationalism or philosophical debates about what we did and why we did it. We’d rather care for and enjoy Ashley, than get into endless debates.”

Ashley is currently 9 years old and measures in at 4 feet 4 inches tall and weighs 70 pounds. Doctors who recently examined her say she is pretty much done growing. Had she not undergone these procedures she would have likely grown to be approximately 5 feet 10 inches tall and weigh in around 125 pounds.

A hospital spokesperson says the decision was made with “ careful consultation and review by an ethics committee.”

Caring for children with profound developmental disabilities can be difficult and demanding, they note. For children with severe combined neurologic and cognitive impairment who are unable to move without assistance, all the necessities of life — dressing, bathing, transporting — must be provided by caregivers, usually parents, and these tasks become increasing difficult, if not impossible, as the child increases in size.

The parents of the 6-year-old, both of whom were college-educated professionals, indicated a strong desire to continue caring for their daughter. Despite having the neurologic development no greater than that of an infant, the 6-year-old responds to her parents and two healthy siblings — vocalizing and smiling in response to care and affection — and "clearly is an integral, and much loved, member of the family," the authors note.

After extensive evaluation, the combined opinion of a team of specialists is that the child will have no significant neurologic or cognitive improvements.

The onset of puberty and continued growth caused concern in the parents about how they would care for their daughter long-term, which they clearly wanted to do. They were concerned about having to turn over care to "strangers" and also about the complications that would arise when the child started menstruating.

Nonetheless, Dr. Jeffrey P. Brosco from the University of Miami and Dr. Chris Feudtner from the University of Pennsylvania, Philadelphia, say that by beginning the debate, this paper helps to "advance our ethical dialogue as we struggle to define our core values in words, laws, and deeds. Only with further research and public discussion will we learn whether attempts to attenuate growth run with or against our fundamental values in caring for children with profound developmental disabilities."

So, is this really in Ashley's best interest? Or is it her parent’s best interest? And, where do we draw the line? What about autistic children, or children not born with damage but acquire it in an accident?

It is not unheard of to sterilize the mentally ill or disabled and in fact was practiced frequently in the early twentieth century, but I don't think that was right either. Most of the cases were based on IQ tests, hearsay and observation of institutional staff, but my point is this, who can really make this decision?