A society is ultimately judged by how it treats its weakest and most vulnerable members
The Ashley Treatment is wrong. Wrong in so many fragging ways. They treat Ashley as if she was a dog. You never take away a person's humanity. You never make them less human. The parents, the doctors had no right to do this.
In the next 10 or 20 years they might find a treatment or cure. I mean we can take cells and grow a liver or a heart. There is hope for Ashley, there is hope for everyone. If this was my child I could never do this.
There is no such thing as false hope, there is only hope.
I do not like the term (pillow angel). She is not a pillow angel. She is not a baby doll. She is not a dog or cat that you can spay and neuter. She is a human being and should always be treated as one. Her parents and doctors are both sick. They are Nazis. The doctors should have their medical license taken away.
My heart goes out to everyone who has to care for a disable child or other loved one. But just because things get to tough for you. Just because you can't handle it. Just because you are a fragging coward. You don't have the right to butcher a child's body.
Mary Vallis, National Post
Published: Friday, January 05, 2007
An American couple have had doctors stunt their disabled nine-year-old daughter's growth in the hopes of keeping her small enough to enable them to care for her.
Ashley has been diagnosed with static encephalopathy, or severe brain damage. She has the mental age of a three- to six-month old. She cannot speak, relies on a feeding tube for nourishment and cannot move on her own.
Yet the girl is an integral member of her family, who live in Washington state: Her parents say she loves Andrea Bocelli's booming voice -- they joke the singer is her boyfriend. Her parents and grandparents do everything for her and call her their "pillow angel" because she stays wherever they put her, usually on a pillow.
When Ashley started showing signs of puberty early at age six, her parents feared she would quickly grow too big for them to lift. Doctors at Children's Hospital in Seattle stunted her growth with high doses of estrogen; she finished the regimen a few weeks ago. They also removed her uterus, appendix and breast buds.
The girl is now 4-foot-5, weighs 65 pounds and is unlikely to get any bigger. Her family says the treatment limited her height by about 20%, or 13 inches.
The doctors call it growth attenuation therapy. Her parents, who have not disclosed their name, call it the "Ashley treatment."
The controversial case, believed to be the only one of its kind, is prompting a debate over the rights of the disabled and their caregivers. Ashley's doctors published a report on the case in a medical journal in October, prompting comparisons with the Terry Schiavo case in Florida. Critics argue Ashley's treatment made life easier for her family, but does not benefit the girl herself.
"I think we would work to treat the conditions without stripping [disabled people] of what little humanity they still have. This brings me back to when we just lobotomized them," one reader from Florida wrote on an online message board.
"I can understand a hysterectomy for her health, but more than that practically turns a human being into a doll."
This week, Ashley's parents launched a blog explaining their decision. The site also features supportive comments from other families caring for disabled children and snapshots of Ashley, blue-eyed and smiling wide.
The treatment, they say, was not a matter of convenience, but rather an attempt to help their daughter.
"Faced with Ashley's medical reality, as her deeply loving parents, we worked with her doctors to do all we could to provide Ashley with the best possible quality of life," they write.
By keeping her small, they say, they can continue to push Ashley around the house in her customized stroller and bathe her in a standard-size bathtub. And it takes only one person to lift her, making it easier for her to be moved into the backyard and to social gatherings, instead of "lying down in her bed and staring at TV (or the ceiling) all day long."
The removal of her breast buds and uterus was also practical. The procedures eliminate any risk of breast cancer and menstrual cramps and make her wheelchair more comfortable (it has a chest strap). They also make it less likely Ashley would be sexually abused by a future caregiver, the parents add.
"Some question how God might view this treatment. The God we know wants Ashley to
have a good quality of life and wants her parents to be diligent about using every resource at their disposal (including the brains that He endowed them with) to maximize her quality of life," they write.
Some medical ethicists say the medical regimen is "probably inherently wrong."
"May we redesign disabled people to make them easier to care for?" asked Dr. Margaret Somerville, founder of McGill University's Centre for Medicine, Ethics and Law. She said people should examine their intuitive reaction to the case and question whether it is ethically justified to override that feeling.
"We've got to start from the basic presumption in favour of the natural. The 'natural' is that
she gets all opportunities to develop that anybody else would have," she explained.
"If we're going to inhibit that natural development, we've got to have very strong justification for doing that. Therefore, the question is: Is making her easier to carry a sufficient justification for that very invasive surgical intervention?"
It is also important to ask whether there are alternatives that would have met the same goals, Dr. Somerville added.
"The alternative is not to change her, but to change the circumstances in which she and her parents find themselves, and to give them human support that will enable the same things to be achieved."
Indeed, an editorial that ran alongside the report in the Archives of Pediatrics & Adolescent Medicine warned that the strategy proposed by Ashley's doctors is "highly speculative" and "ill advised."
Dr. Jeffrey Brosco, a Miami pediatrician and co-author of the editorial, asked whether it is "an attempt at a medical fix to what's really a social and political problem" -- parents like Ashley's who do not have enough access to social support and home care.
Ashley's doctors disagree. They say the potential side effects are minimal and the treatment directly benefits their young patient, regardless of whether she is cared for at home, in an institution or in foster care.
"In reality, Ashley being smaller means that she will be moved more, that she will be held more, that she will be bathed more. All of these things are inherently good for Ashley herself," Dr. Daniel Gunther, the pediatric endocrinologist who oversaw her treatment, said in an interview. The hospital's ethics committee approved the treatment.
"I understand how people have an initial visceral reaction to this that is negative," Dr. Gunther conceded. "But if people step back and really start thinking about what is best for this child and what is in her best interests, I think many people will come to the conclusion that this is a relatively low-risk procedure with a great deal of benefit for the child."
He added the debate has reminded him of a quote from Isaac Asimov: "Never let your sense of morals get in the way of doing what's right."