"Pillow Angel " parents on CNN Tonight ! !!

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If you haven't heard about these ghouls, do tune in ! !! Check your guide for time, it's the Paula Zahn Show (ugh), but maybe just maybe she'll grill these two. If you don't watch the news, these parents (definitely NT) have had doctors 'neuter' their brain damaged daughter so she won't mature sexually. They are below contempt. But the important lesson, in my opinion, is that parents can have any medical procedure they see fit performed on a helpless child. I haven't read about the extent of the girl's brain damage, but just substitute "Autistic" for brain damaged and you'll see what I mean ...

Hey - I just posted an MSN article on the same thing. Our threads should get consolidated and one of them should be locked.

Edit: I'll copy and paste my MSN article into this thread and PM Cockney to lock my thread.

Activists raise outcry over stunting disabled girl
They've filed complaints, want AMA to condemn surgery to stunt growth
http://www.msnbc.msn.com/id/16582361/

CHICAGO - Activists are demanding an investigation into treatment performed on a severely brain-damaged girl whose growth was deliberately stunted to make it easier for her parents to care for her at home.

Critics want an official condemnation from the American Medical Association, which owns a medical journal that first published the Washington state case. They also want state and federal officials to investigate whether doctors violated the girl’s rights.

“It is unethical and unacceptable to perform intrusive and invasive medical procedures on a person or child with a disability simply to make the person easier to care for,” said Steven Taylor, director of Syracuse University’s Center on Human Policy.

Taylor said that the treatment was essentially a medical experiment and that a hospital institutional review board should have been consulted beforehand.

Complaints have been filed with the federal Office for Human Research Protections. But Kristina Borror, a director at the office, said Thursday her agency does not believe it was a research case and thus has no authority to investigate.

The case has prompted an outcry nationwide and abroad since the bedridden girl’s parents disclosed details of the treatment on a blog last week.

The girl, identified only as Ashley, had surgery in 2004 to remove her uterus and breast tissue at a Seattle hospital and received growth-stunting hormones. She is now 4-foot-5, about a foot shorter than the adult height she probably would have reached, her parents say.

Ashley suffered brain damage from an undetermined cause that was diagnosed shortly after birth, leaving her in an infant state. She cannot sit up, walk or speak. Her parents say keeping their little “pillow angel” small will allow them to continue caring for her at home even when she is an adult.

Her treatment also will allow her to avoid menstruation and related discomfort, as well as breast cancer, which runs in the family, her parents say.

The girl’s doctors at Children’s Hospital and Regional Medical Center in Seattle described the case in October’s Archives of Pediatrics & Adolescent Medicine.

Dr. Richard Molteni, the hospital’s medical director, said there was no need to consult an institutional review board because Ashley’s case was not an experiment. He said the hospital firmly believes it acted in her best interest.

Now back to the matter at hand - the surgery.

I don't understand how the parents and physicians could dare to presume to know what is going on in the child's head. Not to mention putting her through a risky and invasive medical procedure for their convenience. It's really disgusting that something like that was even permitted.

What I would like to know is why it's only being publicized now when the surgery took place in 2004? No one has really explained that in any of the news stories that I read about this child.

I thought this happened only recently ???! ! I heard about it on the web, and thought, OMG this can't be for real ! !! How sick can parents be?? Maybe the outcry has caught up to them? I can't imagine what they're going to say to Paula Zahn tonight, hope I don't gag ! !

Ohhhhhhhhhh..... Now we need to read the next paragraph and it all makes sense:



I've read numerous articles about this and somehow missed the part about them blogging it last week.

I found the parents' blog so here is the link:

http://ashleytreatment.spaces.live.com/blog/

What is disturbing to me about this blog is that Ashley smiles and looks pretty self-aware. I can't imagine how she must be feeling about this.

OMG, I can't look.
The whole thing brings to mind that scene in "The Elephant Man" where Dr. Treeves has just met him, and ushered him into the hospital. Someone asks the doctor about the Elephant's Man ability to understand what's happening to him. Treeves answers, "The man is an idiot. My God, I hope the man is an idiot." I hope to God this little girl can't understand what her parents have done to her.

Who was it that headed the Nazi Eugenics program?? Somewhere in a hot corner of hell, they're laughing.

Yeah my gut instinct is I support the families action. But I would like to know more about the logic in the medical procedures. My mom has cared for 2 of our dieing kin folks one had alzheimers and another had a large number of ECT back in the break a leg from the jolts days of mental hospitals, till the day they died at our home. A person that is providing care to a person in their own home has the major moral high road compared to the people who are complaining that would put this lady in a nursing home straped to a bed out of sight. To be abuse with bed sores ,
in urine soaked sheets and perhaps raped by some orderly.

I don't know her age, but I think she's only around ten years old. A little early to worry about long term care, eh? The operations were to keep her from sexual maturity.

As to caring for someone with Alzheimers, I can't imagine what that's like ...

While I agree with that statement, there really has to be some middle ground between the treatment that this girl received and the scenario that you depict.

The parents claim that they have to be able to move her around because they can't find trustworthy people to assist them in the home. That's a load of crap - we had to have CNA's in the home when my husband's grandfather was in his last year of life and we had no trouble finding people who were willing to work and who we could trust. Also, the argument that she needs to be able to continue to fit in her stroller is another load of crap. They make these things called gerry-chairs which are like wheelchairs except that you can be supine in them. There was this morbidly obese stroke patient at one of the places that I worked who got along just fine in her gerry-chair.

Basically, I've worked in nursing homes (decent ones). I realize that there is no shortage of bad ones despite the federal and state oversight that they receive in the U.S. Still, every concern that the parents have brought up regarding the long-term care of this child can be addressed. If it's a concern, there's been an invention to address it by now. The possible exception being a wandering Alzheimer's patient, but that's not exactly a concern in this kid's case.

My mom works in an Alzheimer's care facility. I personally couldn't do it, though not for a lack of trying. I tried to work as a CNA once in a different Alzheimer's facility and the ratios of staff to patients isn't realistic (and this ratio is a legal requirement - not something that the facility makes up). Also, the worst part for me is that the patients can turn on a dime. Like one minute they will be calling you sweetheart and telling you how much they love you, and the next minute they will assault you. I lasted a week at that job - it was like neuro-overload on me.

The parents are acting in the best interest of everyone.

What is sick is people's knee-jerk emotional reaction. You'd have Ashley and her family have a more difficult life so you can feel good about your misguided ethics.

Doing this surgery can be contemptible in that it deprives the individual from some basic biological rights. But in this case we are considering an individual who has no ability to comprehend or exercise such rights. There is no deprivation in this case, and it is the deprivation that is contemptible, not the method.

Yeah that is crap because we hired a lady to help bath my aunt daily and help do
household work.



Yeah my dad put his mother in a nursing home. he did visit her everyday to check on her though. My grandmother thought highly of the fact my mom took good care
of her blood kin. My parents are divorced.

My point about the "logic of the medical procedures." was like many men were casturated routinely in the old days of mental health hospitals. Because they
thought it would calm them down. My guess the family is making the same kinda
judgement. Which likely is based on false data.

But the method involves an invasive surgery and medication that poses serious risks. How can that be justified?

I don't recall them saying anything about wanting to calm her down. They wanted to stunt her growth so that her care is more manageable. They were barely able to lift her at the time she had the surgery. Also, they thought that having a period and large breasts would make her uncomfortable. Nothing was said about behavior.