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View Full Version : "Pillow angel" case sparks continued controversy


RunBandoRun
05-09-07, 12:13 PM
http://www.cnn.com/2007/HEALTH/05/08/ashley.ruling/index.html

Report: 'Pillow angel' surgery broke law
POSTED: 5:44 p.m. EDT, May 8, 2007

By Amy Burkholder
CNN

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.

"Washington law specifically prohibits the sterilization of minors with developmental disabilities without zealous advocacy on their behalf and court approval," said Mark Stroh, WPAS executive director, in a statement.

Children's Hospital, in acknowledging its error, said that beyond implementing changes to ensure that sterilization of disabled children doesn't happen again without a court order, it will seek court approval for other procedures involved in the controversial growth attenuation therapy.

"We deeply regret that a court order was not obtained," Dr. David Fisher, medical director at Children's Hospital said in a statement. "The parents consulted an attorney and obtained a legal opinion that concluded the treatment was permissible under Washington state law without the need for a court order. This is where our system broke down. We take full responsibility."

Ashley, 9, has a condition called static encephalopathy, which means an unchanging brain injury of unknown origin.

"It was like seeing a baby in a much larger body," said Dr. Douglas Diekema, director of education at Treuman Katz Center for Pediatric Bioethics in Seattle and chairman of the bioethics committee of the American Academy of Pediatrics, who was brought in to consult on this case.

"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." Family members call her their "pillow angel."

Working with pediatric endocrinologist Dr. Daniel Gunther, an ethics panel was convened by the hospital to consider the parents' radical request to keep her small forever, through an experimental growth attenuation therapy. The panel, agreed that the treatment was in the girl's best interest.

In 2004, when Ashley was 6, her uterus and breast buds were removed, and she received a high-dose estrogen therapy. As a result, Ashley was frozen as a child. She attained her full growth at 4 feet 5 inches and 75 pounds, with no reproductive capacity.

Ashley's parents say that compassion, not convenience of care, was their motive.

Writing on their blog, her parents said, "Ashley's smaller and lighter size makes it more possible to include her in the typical family life and activities that provide her with needed comfort, closeness, security and love: meal time, car trips, touch, snuggles, etc."

In an interview with CNN in January, Diekema said the ethics panel grappled with whether to permit the hysterectomy but ultimately sided with the family's attorney, who insisted the primary goal was not sterilization.

"As far as removing her uterus with a hysterectomy, there are many profoundly disabled children who are traumatized by menstruation," Diekema said. "The family wanted to spare Ashley that drama. Ashley's a little girl who already had experienced being terrified of blood."

The parents, in an updated entry on their blog Tuesday, reiterated that "given Ashley's developmental state and prognosis ... voluntary procreation was not applicable to her case and will never be."

"Sterilization is not the intent of the 'Ashley Treatment,' but a byproduct of it," they wrote, adding that while they support laws protecting against involuntary sterilization, they believe the law is "too broadly based" to "distinguish between people who are or can become capable of decision-making and those who have a grave and unchanging medical condition such as Ashley."

Diekema told CNN the ethics committee recognized that Washington state law was not perfectly clear with regard to whether a court order would be necessary to do the hysterectomy in someone who could not consent to the procedure.

One nationally known ethicist said he believes the hospital erred.

"I absolutely agree this procedure should have been reviewed by a court," said medical bioethicist Arthur Caplan. "There was not enough due process to look out for the young girl's rights, so I think that was a severe failure in deciding to do this procedure."

Some disability rights advocates say they believe the Ashley case sends a clear message about the rights of the disabled.

"The implementation of the 'Ashley treatment' raises serious concerns about the continuing discrimination faced by people with disabilities -- discrimination which is often based in stereotypes about their potential and value as individuals," Stroh said.

Disabilities attorney Stephen Rosenbaum agrees. "I have a lot of compassion for this family. And I'm not here to shoot darts at them," he told CNN's Paula Zahn. "But they should know that Ashley has a right to develop as a human being."

WPAS says it has no plans to take legal action against the hospital.

Doctors involved in the procedure said that Ashley is doing well in her family's care, which suggests to them it was the right thing to do.

Ashley's parents are devoted to her, Diekema said.

"A disabled child can be a big challenge for a family, and this was a family that clearly has devoted their lives to making life as good as possible for their daughter," he said.

Amy Burkholder is a producer with CNN Medical News. Medical correspondent Elizabeth Cohen and senior producer Jennifer Pifer contributed to this report.



* * * * * * *

I just don't see what the fuss is about here. In my mind, anything that can help this family keep their daughter at home, caring for her themselves, instead of institutionalizing her, is a blessing. Yet there has been controversy from the moment the case was publicized from disability advocates who equate this with cutting someone's legs off, etc.

kvrdave
05-09-07, 12:17 PM
Where the parents consented, it shouldn't be an issue.

But I do understand the other side....where will the next generation of retards come from?

Tracer Bullet
05-09-07, 12:18 PM
I've read about this sick family before. Basically they're using surgery and hormones to stunt the growth of their daughter to keep her as a child.

Ashley's parents say that compassion, not convenience of care, was their motive.

Writing on their blog, her parents said, "Ashley's smaller and lighter size makes it more possible to include her in the typical family life and activities that provide her with needed comfort, closeness, security and love: meal time, car trips, touch, snuggles, etc."

They can say it's about "compassion" all they want, but it's really about making it easier on them.

Minor Threat
05-09-07, 12:19 PM
Ashley:

http://i.a.cnn.net/cnn/2007/HEALTH/05/08/ashley.ruling/story.ashley.2.jpg

Rockmjd23
05-09-07, 12:19 PM
They can say it's about "compassion" all they want, but it's really about making it easier on them.
It rarely happens, but I completely agree. :D

RunBandoRun
05-09-07, 12:24 PM
I've read about this sick family before. Basically they're using surgery and hormones to stunt the growth of their daughter to keep her as a child.

They can say it's about "compassion" all they want, but it's really about making it easier on them.

Why shouldn't they make it easier on them? For God's sake, TB, this child has the intellect of a six-month-old baby and she's never going to improve. Why shouldn't every means available be used so that she can live in the home and be cared for by her family, instead of farmed out to some nursing home?

How many times have you had to care for someone who was completely helpless, had to be bathed, fed, diapers changed, etc. -- I'm not talking about eight-pound babies here, either -- I mean a grown person. My mom was in hospice care at home for three months before she died and my dad collapsed with exhaustion and had to be hospitalized the week after her death, and he'd had HELP caring for her. The physical strain involved with caring for a totally helpless patient should not be discounted.

Minor Threat
05-09-07, 12:28 PM
Basically they're using surgery and hormones to stunt the growth of their daughter to keep her as a child.


With a brain capacity of six months, are you arguing that she'll ever be anything more than a child....?

Tracer Bullet
05-09-07, 12:28 PM
Why shouldn't they make it easier on them? For God's sake, TB, this child has the intellect of a six-month-old baby and she's never going to improve. Why shouldn't every means available be used so that she can live in the home and be cared for by her family, instead of farmed out to some nursing home?

How many times have you had to care for someone who was completely helpless, had to be bathed, fed, diapers changed, etc. -- I'm not talking about eight-pound babies here, either -- I mean a grown person. My mom was in hospice care at home for three months before she died and my dad collapsed with exhaustion and had to be hospitalized the week after her death, and he'd had HELP caring for her. The physical strain involved with caring for a totally helpless patient should not be discounted.

You know what, that's fine- but the parents should be saying that, not some bullshit about "compassion". They're not doing it for her and it doesn't benefit her in any way- it's all about them. Let's just be honest here.

kvrdave
05-09-07, 12:31 PM
Probably is, but I don't have a problem with that. I think it is better than her being in a group home and pumping out kids without the understanding, ability to care for them, etc.

I wonder why an advocate would advocate for her to keep her uterus. Would it be for her best interest or the right of "feminism" etc?

Often the perceived rights of others are pressed for by people who do not have to deal with the consequences they bring.

Numanoid
05-09-07, 12:32 PM
They're not doing it for her and it doesn't benefit her in any way- it's all about them. Let's just be honest here.They're not doing it for her?! Who do you think they are trying to care for?

Tracer Bullet
05-09-07, 12:33 PM
They're not doing it for her?! Who do you think they are trying to care for?

Would they stop caring for her if her body was allowed to mature naturally?

RunBandoRun
05-09-07, 12:35 PM
You know what, that's fine- but the parents should be saying that, not some bullshit about "compassion". They're not doing it for her and it doesn't benefit her in any way- it's all about them. Let's just be honest here.

I'm going to go way out on a limb here and guess that you've never menstruated. :lol: For this child to begin menstruating would likely be a highly upsetting experience, and since menstruation is often accompanied by cramping, nausea, and other nasty symptoms, preventing the possibility of its happening is indeed a compassionate act -- as is ensuring that this child will be able to stay in her home with the family.

I have no idea what this girl's life expectancy is, but after years in the church, I have known and interacted with a number of parents whose children have conditions like Down Syndrome, etc. which mean they will never be able to live on their own. When you're a handicapped child, there are services and schools to go to. After you grow up, your parents are too old to care for you at home, and sooner or later they die -- the risk of your ending up being cared for by strangers is great. At the very least, this child will be able to stay with her parents far longer than if she weighed 150 pounds and bled every month.

Do you really think this issue would have been any better presented if the parents had said, "Well, we really don't care about our daughter's feelings, we just want to make sure she isn't too heavy for us to lift and carry?" Puh-leeze.

Minor Threat
05-09-07, 12:37 PM
At the very least, this child will be able to stay with her parents far longer than if she weighed 150 pounds and bled every month.


Dammit Vibs! I'm trying to eat my lunch.....

Tracer Bullet
05-09-07, 12:37 PM
Do you really think this issue would have been any better presented if the parents had said, "Well, we really don't care about our daughter's feelings, we just want to make sure she isn't too heavy for us to lift and carry?" Puh-leeze.

At least it would be honest.

And don't they have pills that stop menstruation now?

Also, who's to say at some point in the future her condition won't be curable? Then what?

kvrdave
05-09-07, 12:38 PM
Also, who's to say at some point in the future her condition won't be curable?

Uhhhhh, everyone.

RunBandoRun
05-09-07, 12:39 PM
At least it would be honest.

And don't they have pills that stop menstruation now?

Also, who's to say at some point in the future her condition won't be curable? Then what?

Preventing menstruation is dangerous if you have an intact uterus. The lining needs to be shed or it can build up on the walls and become cancerous. That's why the hysterectomy was performed in the first place.

Minor Threat
05-09-07, 12:41 PM
Preventing menstruation is dangerous if you have an intact uterus. The lining needs to be shed or it can build up on the walls and become cancerous. That's why the hysterectomy was performed in the first place.

Dammit Vibs! I'm trying to eat my lunch.....

RunBandoRun
05-09-07, 12:41 PM
MT: Go ahead, I won't stop you. ;)

Tracer Bullet
05-09-07, 12:43 PM
Preventing menstruation is dangerous if you have an intact uterus. The lining needs to be shed or it can build up on the walls and become cancerous. That's why the hysterectomy was performed in the first place.

You know, I don't even really have that much of a problem with the hysterectomy. I never even said anything about it. It seems that they may have some good psychological evidence that menstruation would cause psychological trauma to this child.

However, I still don't see how anyone can support them stunting her growth just for the sake of making it easier on the parents.

Altimus Prime
05-09-07, 12:43 PM
I've read about this sick family before. Basically they're using surgery and hormones to stunt the growth of their daughter to keep her as a child.



They can say it's about "compassion" all they want, but it's really about making it easier on them.

She'll never develop mentally beyond that of a child, from what I can gather. Sounds like the family wants to keep her physically the same way.

But for "Ashley," she really has no life. She's not living, she's existing.

NCMojo
05-09-07, 12:46 PM
Also, who's to say at some point in the future her condition won't be curable? Then what?
You know I love ya, Tracer, but... didn't you argue against this same point in the Terri Schiavo case?

kvrdave
05-09-07, 12:47 PM
You know I love ya, Tracer, but... didn't you argue against this same point in the Terri Schiavo case?


Man, I was waiting on the Schiavo quip for just the right moment, and you jumped me.

:(

Tracer Bullet
05-09-07, 12:48 PM
You know I love ya, Tracer, but... didn't you argue against this same point in the Terri Schiavo case?

Terri Schiavo was an adult.

Kittydreamer
05-09-07, 12:49 PM
How old is the girl now?

RunBandoRun
05-09-07, 12:50 PM
How old is the girl now?

I think she's six or seven, something like that, Kitty.

FantasticVSDoom
05-09-07, 12:51 PM
First of all this is not the 40's or 50's where DD individuals live in a state run institution pissing and shitting on themselves anymore. There are plenty of organizations where the parents can get proper support and care that they dont have to pay for and will give better services and care then what the parents can provide for the most part.

Tracer Bullet
05-09-07, 12:52 PM
I think she's six or seven, something like that, Kitty.

If you had read your own article, you'd know she's 9. ;)

RunBandoRun
05-09-07, 12:54 PM
If you had read your own article, you'd know she's 9. ;)

Mea maximum culpa. ;)

kvrdave
05-09-07, 12:58 PM
Terri Schiavo was an adult.

Why does that matter?

Tracer Bullet
05-09-07, 01:02 PM
Why does that matter?

Two two situations are not even remotely comparable. Schiavo was an adult in a persistent vegetative state who was married, giving her husband power of attorney over her medical decisions.

Ashley is a 9-year-old girl whose parents are supposed to make decisions that will benefit her, not make it easier on them to care for her. She's also awake and aware.

Ranger
05-09-07, 01:02 PM
The biggest problem is that the hospital 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.

Look into the history of eugenics, and there certainly have been some horrible stuff done. Now, there are strict limits, thankfully, to better protect the rights of individuals.

I would have to look into the whole history about the motivation and possible benefits of "keeping her small", but considering that an ethics panel is involved because of the parents' unusual request, I have to think that there is something wrong here.

Numanoid
05-09-07, 01:07 PM
I agree with the ruling that more protocol should have been followed in order to perform the surgery.

But can anyone who thinks it is wrong tell me what possible benefit to the child NOT doing it would have had? What is it exactly that they are being denied, in your opinion?

RunBandoRun
05-09-07, 01:11 PM
I agree with the ruling that more protocol should have been followed in order to perform the surgery.

But can anyone who thinks it is wrong tell me what possible benefit to the child NOT doing it would have had? What is it exactly that they are being denied, in your opinion?

I'm agreeing with you again, Numa. I'm scared. *biting fingernails dramatically* ;)

Rockmjd23
05-09-07, 01:12 PM
I bet the parents used formula instead of breast milk. No wonder she's disabled. -ohbfrank-

devilshalo
05-09-07, 01:23 PM
However, I still don't see how anyone can support them stunting her growth just for the sake of making it easier on the parents.
Yeah, because it would be even more convenient for the parents to call Kervorkian and not have to deal with any of this. I guess we're lucky in that THIS. IS. NOT. SPARTA.

kaze0
05-09-07, 01:24 PM
Disabled or not, it seems so crazy that parents can order this performed without a court order.

orangerory
05-09-07, 01:42 PM
http://www.brazosriver.com/TrentLott021217.jpg

"I have looked at video of Ashley and I believe she was curable!"

NCMojo
05-09-07, 01:44 PM
Two two situations are not even remotely comparable. Schiavo was an adult in a persistent vegetative state who was married, giving her husband power of attorney over her medical decisions.

Ashley is a 9-year-old girl whose parents are supposed to make decisions that will benefit her, not make it easier on them to care for her. She's also awake and aware.
Actually, Terri Schiavo was just as "awake and aware" -- you could stick her with a pin and she would wince with pain, she articulated just as incomprehensibly, etc. As for the power of attorney... in this case, the biological parents of a minor child have almost total control over medical decisions, well beyond even what a spouse would have.

(There is actually a major difference -- in Ashley's case, if there was a "miracle cure", she would still be alive and walking around. Kind of past that point with Terri.)

But, see, that's the problem with the whole "who's to say at some point in the future her condition won't be curable" argument. It was just as invalid in the case of Terri Schiavo as it is here. We're talking permanent and irreparable brain damage. There is no getting better. Not for Terri, and not for Ashley. Ever. Frankly, while there are elements of this case that do make me uncomfortable (should the parents of mentally disabled children be able to painlessly end their lives? Should they be allowed to sterilize them? What about allowing them to participate in dangerous clinical trials?)... I still nevertheless believe that the parents of Ashley do care for their daughter, and that they honestly are doing what they think is best.

Bronkster
05-09-07, 02:03 PM
Also, who's to say at some point in the future her condition won't be curable?
Then she's been denied her right to purchase a flying car! Those bastards!

I do see the compassion side of this from the parents, and I'm certain that it wasn't an easy decision for them to make. "Honey, let's have our little girl surgically altered so she never grows up! w00t!" I think Vibiana's points are pretty valid. Outside of the legal aspect of this (which wasn't followed), I don't see where it's anyone else's business.

Kittydreamer
05-09-07, 02:11 PM
I think she's six or seven, something like that, Kitty.

Wow, this is a sad story but at least the parents are willing to take care of her and not drop her off at a nursing home. I got no beef with what her parents did. If it makes their lives easier and makes the life of the little girl better then good for them.

RunBandoRun
05-09-07, 02:16 PM
Wow, this is a sad story but at least the parents are willing to take care of her and not drop her off at a nursing home. I got no beef with what her parents did. If it makes their lives easier and makes the life of the little girl better then good for them.

That's what I think too. Sheesh. Save the anger for people who neglect their profoundly disabled child and leave her lying in her own waste, or who shove her into a nursing home simply because they can't be bothered with her. During the AIDS baby epidemic in New York, plenty of infants never left the hospital and wound up dying in foster care because their crack ho mommies didn't give a damn and just left them in the nursery.

satellite
05-09-07, 02:32 PM
That's what I think too. Sheesh. Save the anger for people who neglect their profoundly disabled child and leave her lying in her own waste, or who shove her into a nursing home simply because they can't be bothered with her. During the AIDS baby epidemic in New York, plenty of infants never left the hospital and wound up dying in foster care because their crack ho mommies didn't give a damn and just left them in the nursery.

I applaud this family for making a very difficult decision - and I am sure there are plenty of "TB"s out there making them feel bad about it.

TB - you need to stop seeing this as a convenience for the parents, and instead embrace the relief for the child. I have watched terminally incapacitated love ones/family members rot away in a hospital bed. She will be loved and taken care of at, basically, the age her to which her brain is developed.

UncleGramps
05-09-07, 02:56 PM
I wonder how much joy the child can/will get out of life. I don't envy the parents - it must be very difficult for them. But I do have to say that the phrase "pillow angel" disturbs me greatly. :whofart:

Cool Kitten
05-09-07, 02:58 PM
You know what, that's fine- but the parents should be saying that, not some bullshit about "compassion". They're not doing it for her and it doesn't benefit her in any way- it's all about them. Let's just be honest here.
and why shouldn't they be able to make it easier on themselves?
After all, people like you aren't rushing to their side to offer help. Nice to be able to critisize someone's choices when you know nothing about their day to day struggles.
What about this girl developing breasts, going through hormonal puberty, getting her periods, growing to be adult-sized? Are you going to be there to help her parents move her around, lift her, change her diapers, etc?

Altimus Prime
05-09-07, 03:04 PM
To me, the fact they are calling her a "pillow angel" is just bizarre.

I don't know what the point of her existence is.

RunBandoRun
05-09-07, 03:16 PM
To me, the fact they are calling her a "pillow angel" is just bizarre.

I don't know what the point of her existence is.

Hell, I don't know what the point of my OWN existence is, unless it's to make Bando damn glad he never knew me in real life. :lol:

I call my cats "shnoodle bunnies" and that's pretty bizarre. Lots of beloved children and pets have affectionate nicknames.

Altimus Prime
05-09-07, 03:29 PM
You can experience life. You can learn, grow and develop. Yes, you could reproduce, if you so chose. You can contribute to society. You can produce.

Aside from basic biological functions, what can the "pillow angel" do? I doubt a child in this condition is what her parents ever wanted or hoped for. I'm sure they wrestle with those thoughts all the time. I don't envy their position. They're stuck not with a child or a daughter, but what they've seemingly resigned to treating like a pet, ie less than a child.

Kittydreamer
05-09-07, 03:33 PM
Hell, I don't know what the point of my OWN existence is, unless it's to make Bando damn glad he never knew me in real life. :lol:

I call my cats "shnoodle bunnies" and that's pretty bizarre. Lots of beloved children and pets have affectionate nicknames.

We have lots of nick-names in my house. Sirius gets called "Big fat marshmallow", Meesha gets called "psycho-bitch cat from hell", Squeaky is known as "dumbass" and our new babies usually just get called "baby girl or boy". The humans have nick-names, too like Daniel gets called "stinker" or "sugarbug" and Chris is my little bug. My husband gets called "Bando" but usually only during sex. All of this is done out of love. :up:

Bandoman
05-09-07, 03:41 PM
The Force alerted me to the fact that my name was being used in vain.

Looks like Pillow Angel won't be making any throw pillows in her future.

RunBandoRun
05-09-07, 03:43 PM
but what they've seemingly resigned to treating like a pet, ie less than a child.

Perhaps. But they're no more able to truly communicate with this child in a verbal sense than they would be a dog or a cat, so I can't fault them if they ARE resigned to it.

Rockmjd23
05-09-07, 04:07 PM
They're stuck not with a child or a daughter, but what they've seemingly resigned to treating like a pet, ie less than a child.
That's the impression I got. Of course, for many, that would mean treating her better than a person. ;)

Altimus Prime
05-09-07, 04:11 PM
That's the impression I got. Of course, for many, that would mean treating her better than a person. ;)

Agreed.

And imagine if you were able to get a kitten or a puppy, and they were forever a kitten or a puppy. Lots of people lose interest in pets when they grow up.

Same thing happens with people. I know someone infatuated with babies. But once they pass the toddler stage, that person is no longer interested.

FantasticVSDoom
05-09-07, 10:47 PM
Again, you have to understand the services out there that are available for a person who is developmentally disabled are leaps and bounds better than what many people believe them to be. Ive worked in the field for 13 + years and this whole notion that someone, even profoundly retarded, cant have any quality of life or learn to do things. Now Im not this girl's parents, and dont claim one way or the other what they should do, but there are more than enough options for them if they would have decided to research those options better, and the hospital should be held liable for not knowing about these as well.

Tracer Bullet
05-10-07, 10:12 AM
Again, you have to understand the services out there that are available for a person who is developmentally disabled are leaps and bounds better than what many people believe them to be. Ive worked in the field for 13 + years and this whole notion that someone, even profoundly retarded, cant have any quality of life or learn to do things. Now Im not this girl's parents, and dont claim one way or the other what they should do, but there are more than enough options for them if they would have decided to research those options better, and the hospital should be held liable for not knowing about these as well.

:thumbsup:

Mrs. Danger
05-10-07, 10:35 AM
I can see how a disabled child being sterilized would punch a lot of buttons.

At the same time I think how much friendlier the world would be for a person "with the mind of a child", it they showed it on the outside by looking like a child.

Then, I think the parents are creepy, treating their daughter like a doll.

This case certainly opens an ethical can of worms.

The court order thing bugs me. What if this sort of thing turns into "you have to get court approval to do any elective surgery on a mentally disabled person"?

AAAAAAGH!

I think the little girl will, in the long run, benefit from the surgery.

I just hope it doesn't become trendy.

PrincessT
05-10-07, 01:30 PM
how much longer before some freak parent does this to a normal child?

AGuyNamedMike
05-10-07, 01:39 PM
Court order or not, I think many are overlooking the fact that the hospital convened an ethics panel, and after careful deliberation the panel did approve the procedure. Is it the opinion of Otter that a single judge is better educated and equipped to make this determination than a panel of experienced physicians (much less the loving parents)?