Ashley Treatment, they treat Ashley like a dog

http://novus-ordo-seclorum.us/

The Ashley Treatment is wrong. Wrong in so many fragging ways. They
treat Ashley as if she was a dog. You never take awaya a person's
humanity. You never make them less human. The parents, the doctors had
no right to do this.

Ashley is nine now. 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.





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."


http://novus-ordo-seclorum.us/

sam7i5erotdkhgcx wrote:
http://novus-ordo-seclorum.us/

The Ashley Treatment is wrong. Wrong in so many fragging ways. They
treat Ashley as if she was a dog.

No, they didn't. I think your average dog owner would disagree as
well, as most people don't carry their 65-pound dog from room to room,
change their diaper, and give them full-immersion baths, or feed them,
or cuddle them.

You never take awaya a person's
humanity. You never make them less human.

And they haven't. She' still quite human. And I suspect the very small
adults out there would agree that they are human, even if they have had
a hystectomy.

The parents, the doctors had
no right to do this.

shrug I suppose that's a matter of opinion.

Ashley is nine now. 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.

Well, no we cannot. We cannot grow a liver or a heart. Maybe soon.
It's being worked on. But it cannot now be done. I've heard that
doctors can currently grow a new bladder, but that's the only
successful one at this point. So she's got to suffer for 20+ years on
the off chance they might cure her, when we have no way of knowing if
it will ever happen? And I might add, most doctors think there will
NEVER be a cure. And if they've progressed to the point of growing a
new brains, don't you think they might also be able to grow her a new
uterus? And turn on her growth genes so she could grow a bit more?

There is hope for Ashley, there is hope for everyone. If this
was my child I could never do this.

Then don't.

But you'd rather put her in an institution where she'll wash TV all
day, and where they'll have to strap her up and take several people to
put her into a bath once a month? People with her condition tend
toward obesity, and it's just not easy to change the diapers of a 5'6"
tall, 250 pound woman, or bathe her, or cuddle her. And because these
things are so difficult, they are often not done enough to prevent
problems. Christopher Reeve, who had excellent care, still died of
complications surrounding bed sores.

There is no such thing as false hope, there is only hope.

You know what? Go volunteer at a home for severely disabled adults for
a couple of years, and then come back and see if you feel the same.
Sanctimony isn't useful

Cathy Weeks

thank you Cathy for putting it so well. I agree with you on many
points and also agree largely with Ashley's parents and their
motivation for their decision. I think if we could ask the adult
victims of severe disability if they wouldn't rather have a smaller
body so their caregivers could hold them and rock them and carry and
move them and fill their lives with more interest and less bodily
discomfort- ie bedsores- I think they would gladly trade their adult
bodies for the benefits Ashley will enjoy.
lissa

I'm with Cathy Weeks on this one. I've never looked after a disabled
child, but I've looked after a family member with Alzheimer's. People
in late Alzheimer's are totally helpless, and very similar to Ashley in
terms of the care they need. They can't talk, walk, feed themselves,
control bladder or bowels etc. I totally get the issue of body size
being a problem for a caregiver. Inability to cope with a large heavy
person is a major reason for putting a person in an institution.

Given that Ashley is not going to get better physically or mentally, I
can see their motivation for wanting to keep her physically managable
so they can keep her at home, and give her the best possible quality of
life. Her caregivers will be aging ultimately, and its next to
impossible to cope with a large adult who is so totally disabled - and
I'm betting money, the dealbreaker for the parents being able to
successfully care for her will be body size and weight. Their
alternative would be to put her in a nursing home or chronic care
hospital, and I promise you, her life won't be as rich and happy as it
would be at home surrounded by family.

M.

http://www.cnn.com/CNN/Programs/paula.zahn.now/

Paula Zahn will talk about this on her show monday night on CNN.


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.









sam7i5erotdkhgcx wrote:
http://novus-ordo-seclorum.us/

The Ashley Treatment is wrong. Wrong in so many fragging ways. They
treat Ashley as if she was a dog. You never take awaya a person's
humanity. You never make them less human. The parents, the doctors had
no right to do this.

Ashley is nine now. 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.





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."


http://novus-ordo-seclorum.us/

sam7i5erotdkhgcx wrote:
http://www.cnn.com/CNN/Programs/paula.zahn.now/

Paula Zahn will talk about this on her show monday night on CNN.


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.


No. yoiu have the riite to watch the kid get older and you get older
and you cant lift her or carry her or care for her so you put her in a
home where she gets instititonal care and maybe someone loooks at her
body and rapes her becoz she cant say yes or no or anything and she
gets bedsores. Yeh. You can do that like many folks have to do.

If you try to keeep her wwhere you can helpp her your evel. All this so
she can grow into a womman in her body and a babey in her mind.

wrote:
I'm with Cathy Weeks on this one. I've never looked after a disabled
child, but I've looked after a family member with Alzheimer's. People
in late Alzheimer's are totally helpless, and very similar to Ashley in
terms of the care they need. They can't talk, walk, feed themselves,
control bladder or bowels etc. I totally get the issue of body size
being a problem for a caregiver. Inability to cope with a large heavy
person is a major reason for putting a person in an institution.

I've been in a similar situation (looking after a family member with
AD), and I agree that these are valid points. And yet there's a part of
me that balks at two things: (a) how these decisions were easy and
straightforward for the parents (but that's just second-guessing, and
yet, all of us tended to waffle and reflect for a long, long time, so
I'm perhaps unnaturally suspicious of people who make such decisions
with ease....again, following the link on the blog to the MD and coming
across his support for wrongful death claims also gave me pause, not
that such claims are a bad thing, per se, but -- well, I can't entirely
articulate why it made me uncomfortable); and (b) how this is advocated
as a treatment for other kids with disabilities similar to Ashley.

I'm afraid I'm coming off as a total hard-ass, yet I can easily (quite
easily) see how this could be successfully supported and promoted by
physicians and insurance to all parents/guardians of infants with very
severe disabilities. The Ashley blog makes it seem like a win all
around -- easier to extend in-home care (thereby reducing Medicaid
nursing home expenses), lower likelihood of caregivers (paid or
otherwise) acquiring lift and positioning injuries, and increased
stimulation (or positioning) by the caregiver for the patient.

And yet, I can't shake how some nuance about the size restricting
hormones = A Good Thing just creeps me out.

Probably way too sensitive,
Caledonia

"Darth Breather" wrote in message
ps.com...

sam7i5erotdkhgcx wrote:
http://www.cnn.com/CNN/Programs/paula.zahn.now/

Paula Zahn will talk about this on her show monday night on CNN.


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.


No. yoiu have the riite to watch the kid get older and you get older
and you cant lift her or carry her or care for her so you put her in a
home where she gets instititonal care and maybe someone loooks at her
body and rapes her becoz she cant say yes or no or anything and she
gets bedsores. Yeh. You can do that like many folks have to do.

If you try to keeep her wwhere you can helpp her your evel. All this so
she can grow into a womman in her body and a babey in her mind.

Some people just do not understand that it is a choice of two bad things.
Their self-righteousness enables them to sit in judgement on those who have
been forced into the position of making that choice. No doubt if the
parents had died and left the child helpless, this person would have
similarly ranted on their evil decisions. It makes the choice far easier if
you are not involved, you know.

Caledonia wrote:

And yet, I can't shake how some nuance about the size restricting
hormones = A Good Thing just creeps me out.

Probably way too sensitive,

I don't think you're way too sensitive. I think
it is disturbing and requires serious scrutiny. It's just
that sometimes there aren't any great answers, and you have
to choose the path that comes out ahead on balance, even if
it's not free from concerns.

I do discount some of what's on the parents'
website. It is, after all, propaganda designed to
defend their decision and I'm sure they couched things
the way they thought would be most persuasive to others.
So, for example, I don't *really* believe that they didn't
have to do any soul-searching to come to this decision.
I think they cast it as an "easy" decision in order to
drive home their point that in their opinion, once you
consider everything, they believe it's not a terribly
close call to make the decision they made.

Best wishes,
Ericka

snip
"Caledonia"
wrote:
I'm with Cathy Weeks on this one. I've never looked after a disabled
child, but I've looked after a family member with Alzheimer's. People
in late Alzheimer's are totally helpless, and very similar to Ashley in
terms of the care they need. They can't talk, walk, feed themselves,
control bladder or bowels etc. I totally get the issue of body size
being a problem for a caregiver. Inability to cope with a large heavy
person is a major reason for putting a person in an institution.

I've been in a similar situation (looking after a family member with
AD), and I agree that these are valid points. And yet there's a part of
me that balks at two things: (a) how these decisions were easy and
straightforward for the parents (but that's just second-guessing, and
yet, all of us tended to waffle and reflect for a long, long time, so
I'm perhaps unnaturally suspicious of people who make such decisions
with ease....again, following the link on the blog to the MD and coming
across his support for wrongful death claims also gave me pause, not
that such claims are a bad thing, per se, but -- well, I can't entirely
articulate why it made me uncomfortable); and (b) how this is advocated
as a treatment for other kids with disabilities similar to Ashley.

I'm afraid I'm coming off as a total hard-ass, yet I can easily (quite
easily) see how this could be successfully supported and promoted by
physicians and insurance to all parents/guardians of infants with very
severe disabilities. The Ashley blog makes it seem like a win all
around -- easier to extend in-home care (thereby reducing Medicaid
nursing home expenses), lower likelihood of caregivers (paid or
otherwise) acquiring lift and positioning injuries, and increased
stimulation (or positioning) by the caregiver for the patient.

And yet, I can't shake how some nuance about the size restricting
hormones = A Good Thing just creeps me out.

Probably way too sensitive,
Caledonia

Way too sensitive - ? No. Balancing the wonderful best of what should be
with the harsh realities of everyday comes down to decisions by the
caregivers. Parent makes it everyday for their children, and in the best of
circumstances hopefully around age 18 there is a responsible adult able to
take care of themselves, if the parents are capable of making good decisions
for their circumstances.

The whole concept of what has been done creeps me out to, but I don't walk
in the parents shoes. My husband and I have responsibilities for our
somewhat normal children (whatever that means), and I have responsibility
for my mother, who is still relatively young and somewhat independent. But
that will change over the next 20 years or however long. If I had the money
I would also take responsibility of my youngest brother, totally 'normal'
but in serious need of a new life. And I can't do it, which also freaks me
out. He is an adult, but cannot do it for himself .

So I hope their decision was an honest one, and all involved daily and
intimately, can live with the results.
Marc