The debate about the decision taken by the parents of Ashley, a nine-year old girl with the mental age of 3 months, to keep her growth stunted for life has captured the attention of the public.

What has become known as the "Ashley Treatment" has provoked an emotional, wide-ranging public response. There are over 1,000 messages from nearly 600 people on an MSN message board addressing the question "Should parents have the right to stunt growth of disabled kids so they can keep caring for them at home?"

Comments range from "smacks of eugenics", " I can't agree with this", "I find this offensive", "no one should be allowed to intentionally arrest the child's natural development", to "Oh... to have the ability to walk in someone else's shoes", "I would never judge what a parent with that situation would do".

Parents raising disabled kids are also writing in, on both sides of the debate. Some saying that it is wrong to do this, it is not in the best interests of the child, while others are saying that it is, and the interests of the carers are also important, especially in a lifelong situation with limited support. One mother expresses her relief that her severely disabled son is naturally growth stunted, while another writes along the lines that when you only have so much resource and if you have to choose between cognitive and physical development then surely cognitive development is the right ethical choice.

Nine-year old Ashley lives in Washington State with her parents and suffers from static encephalopathy (literally permanent and unchanging brain damage). She can't walk or talk, is unable to keep her head up, cannot hold a toy, and takes food through a tube. She cannot change her sleeping position by herself, and has to be moved to avoid bedsores.

Her parents took the decision to keep her small with advice from doctors. In a blog that documents Ashley's story, they say their decision was not a difficult one to take, which may surprise many people. "Ashley will be a lot more physically comfortable free of menstrual cramps, free of the discomfort associated with large and fully-developed breasts, and with a smaller, lighter body that is better suited to constant lying down and is easier to be moved around," they add.

The treatment, known as "growth attenuation" started in 2004, when Ashley's body started showing signs of puberty, and included performing a hysterectomy, hormone therapy and removal of breast buds. The effect of the treatment is that she will never grow breasts, have periods or get pregnant. And her physical size and weight will stay around 1.34 m (4 ft 5 in) and 34 kg (75 lbs).

Whatever side of the debate we find ourselves on, one thing surely on which we must all agree is that parents and carers for severely disabled kids need lots of support, and perhaps this debate will cause policy makers to think about how funds and resources are apportioned to line up with their needs.

Jeffrey Brosco, a pediatrican from the University of Miami alluded to this in an editorial that accompanied Daniel Gunther's paper describing Ashley's treatment in the October 2006 edition of the Archives of Pediatrics and Adolescent Medicine. He reflects on the irony of a system where the support shrinks as the child grows.

Ashley's Treatment Blog (maintained by Ashley's parents).

The article where Dr Gunther and colleagues describe Ashley's Treatment: "Attenuating Growth in Children With Profound Developmental Disability: A New Approach to an Old Dilemma."
Daniel F. Gunther, MD, MA; Douglas S. Diekema, MD, MPH.
Arch Pediatr Adolesc Med. 2006;160:1013-1017.

Click here for short extract of the article.

: Catharine Paddock
Writer: blog