lily
03-13-2008, 12:24 AM
It's unethical and against the law to do..........but I think I might have made the same decision, if I was the main caregiver and didn't want my child to end up in an institution. (http://www.cnn.com/2008/HEALTH/conditions/03/12/pillow.angel/index.html?iref=mpstoryview)
Disabled girl's parents defend growth-stunting treatment
By Amy Burkholder
CNN
NEW YORK (CNN) -- It's been a year since the parents of a severely disabled
child made public their decision to submit their daughter to a hysterectomy,
breast surgery and drugs to keep the girl forever small. Today, the couple
tell CNN, they believe they made the right decision -- one that could have a
profound impact on the care of disabled children worldwide.
The profoundly disabled girl known as Ashley, now 10, has achieved her full
height, 4 feet 5 inches.
"The 'Ashley treatment' has been successful in every expected way," Ashley's
parents told CNN exclusively in a lengthy e-mail interview. "It has
potential to help many others like it helped our precious daughter."
While unwavering in their belief in the treatment, Ashley's parents continue
to insist on anonymity. In the year since Ashley's parents went public, not
only did the hospital that sterilized Ashley admit it broke Washington state
law, but also the doctor who treated Ashley committed suicide.
As scrutiny of the case deepens, so too does the chasm in the medical
community: Is it mutilation, with doctors "playing God" -- or, is stunting
growth a liberating option for caregivers and the disabled children who will
need constant care for the rest of their lives?
Ashley is now 10 years old and, at 4 feet 5 inches tall, has achieved her
full height and weight, 63 pounds. The treatment permanently closed her
growth plates and took more than a foot off her anticipated height.
"Ashley did not grow in height or weight in the last year, she will always
be flat-chested, and she will never suffer any menstrual pain, cramps or
bleeding," say her parents, who felt it important to publicly address their
decision after repeated interview requests, in the hopes of sharing their
experience with other families.
They responded by e-mail only, to protect the family's identity.
Ashley's current state -- to them -- is the definition of success.
She was born brain-damaged, with a condition described as static
encephalopathy, or cerebral palsy. One of her doctors described her mental
capacity as that of a 6-month-old, dependent upon her parents to meet every
need. She does not walk or talk; she's fed through a tube and wears diapers.
When Ashley was 6, her parents approached Children's Hospital and Regional
Medical Center in Seattle, Washington, for the operations. They believed
this would make it easier to cuddle and carry a child who can do little more
than lie propped on a pillow.
Weight and height are the "worst enemy," they write, for children such as
Ashley, for whom they've coined the term "pillow angels."
In 2004, Children's Hospital performed a hysterectomy, removed Ashley's
breast buds and gave her high-dose estrogen to retard growth and sexual
maturation -- a procedure that has risks, but to date has not harmed her,
her parents say.
While the "Ashley treatment" was first published in the October 2006 issue
of the Archives of Pediatrics & Adolescent Medicine, it wasn't until the
family posted its blog last year that a firestorm erupted in the
blogosphere, with responses from "inhumane" and "perverse" -- to "walk in
our shoes."
"If parents of children like Ashley believe this treatment will improve
their children's quality of life, then they should be diligent and tenacious
in providing it for them," her parents write. "We have a sacred duty to do
what we believe is right for our children."
But in Ashley's case, what her parents thought was right wasn't legal.
In May 2007, Children's Hospital admitted it broke state law by giving
Ashley a hysterectomy without a proper court review. To perform any such
treatment today would require a court order, as well as review by a panel of
experts in medicine and ethics and people with disabilities, says Dr.
Douglas Diekema of Treuman Katz Center for Pediatric Bioethics, the
consulting ethicist on Ashley's case.
So, will doctors stop the growth of more children like Ashley?
Right now, no growth-attenuation therapy is being administered by other
doctors anywhere in the nation, according to pediatric experts. Supporters
wonder whether another factor, the suicide in September of Ashley's
endocrinologist, Dr. Daniel Gunther, may have slowed wider adoption of the
treatment.
"We know from reliable sources his treatment of our daughter was a source of
energy and motivation for him," Ashley's parents write. "He was frustrated
about being blocked from providing this treatment to other children in need.
He strongly believed this treatment should be available to them."
The family appears to be the lone voice with that opinion; CNN shared the
family's comment with Children's Hospital, but did not get a response. In
media reports, colleagues and family members were said to believe Gunther's
suicide was not related to the treatment of the girl.
Another complicating factor -- some doctors remain adamant the treatment
shouldn't be available.
"Adults can consent. But for a child, we're making decisions for them and
hoping in our heart of hearts we are making the right decisions," says Dr.
Nancy Murphy, chairman of the American Academy of Pediatrics Committee on
Children with Disabilities.
Murphy will push for consensus among doctors at a pediatrics conference
later this year, but acknowledges strong discord as critics continue to
insist that keeping children small reduces them to a permanent infant-like
condition, denying the basic human right to experience an adult body, adult
feelings and adult relationships. But for Ashley, that may be moot.
"[This disability] shatters the reason we become parents: to watch kids
grow, to be part of their lives and to launch into their own lives," says
Murphy. "When you have a child with lifelong dependency, you don't get to
launch your kid, and your caregiver options are limited."
But like many other people with disabilities, 43-year-old Anne Rader, who
also has cerebral palsy but in a much less severe form than Ashley's, sees
the treatment as dehumanizing -- and perhaps most significantly --
irrevocable.
"The parents are not seeing the potential of the child; they are seeing a
baby," says Rader. "People with disabilities have to look at the potential
of our lives: of available new technology, new equipment, medical advances.
Things can change so quickly now."
Some ethicists, too, remain staunch in their assessment that the "Ashley
treatment" is a violation of not only human dignity, but also of a
physician's oath to do no harm.
Health Library
a.. MayoClinic.com: Cerebral Palsy
"I think mutilating surgery involving removal of breast buds is indefensible
under any circumstances," says Arthur Caplan, the chairman of the Department
of Medical Ethics and director of the Center for Bioethics at the University
of Pennsylvania. "Growth retardation is not a substitute for adequate home
aides and home assistance."
Ashley's parents remain convinced what they did for Ashley is the most
loving choice they could have made for their daughter and want that for
other disabled children.
"We feel that if our time and effort ended up helping a single pillow
angel... then it is worthwhile."
Disabled girl's parents defend growth-stunting treatment
By Amy Burkholder
CNN
NEW YORK (CNN) -- It's been a year since the parents of a severely disabled
child made public their decision to submit their daughter to a hysterectomy,
breast surgery and drugs to keep the girl forever small. Today, the couple
tell CNN, they believe they made the right decision -- one that could have a
profound impact on the care of disabled children worldwide.
The profoundly disabled girl known as Ashley, now 10, has achieved her full
height, 4 feet 5 inches.
"The 'Ashley treatment' has been successful in every expected way," Ashley's
parents told CNN exclusively in a lengthy e-mail interview. "It has
potential to help many others like it helped our precious daughter."
While unwavering in their belief in the treatment, Ashley's parents continue
to insist on anonymity. In the year since Ashley's parents went public, not
only did the hospital that sterilized Ashley admit it broke Washington state
law, but also the doctor who treated Ashley committed suicide.
As scrutiny of the case deepens, so too does the chasm in the medical
community: Is it mutilation, with doctors "playing God" -- or, is stunting
growth a liberating option for caregivers and the disabled children who will
need constant care for the rest of their lives?
Ashley is now 10 years old and, at 4 feet 5 inches tall, has achieved her
full height and weight, 63 pounds. The treatment permanently closed her
growth plates and took more than a foot off her anticipated height.
"Ashley did not grow in height or weight in the last year, she will always
be flat-chested, and she will never suffer any menstrual pain, cramps or
bleeding," say her parents, who felt it important to publicly address their
decision after repeated interview requests, in the hopes of sharing their
experience with other families.
They responded by e-mail only, to protect the family's identity.
Ashley's current state -- to them -- is the definition of success.
She was born brain-damaged, with a condition described as static
encephalopathy, or cerebral palsy. One of her doctors described her mental
capacity as that of a 6-month-old, dependent upon her parents to meet every
need. She does not walk or talk; she's fed through a tube and wears diapers.
When Ashley was 6, her parents approached Children's Hospital and Regional
Medical Center in Seattle, Washington, for the operations. They believed
this would make it easier to cuddle and carry a child who can do little more
than lie propped on a pillow.
Weight and height are the "worst enemy," they write, for children such as
Ashley, for whom they've coined the term "pillow angels."
In 2004, Children's Hospital performed a hysterectomy, removed Ashley's
breast buds and gave her high-dose estrogen to retard growth and sexual
maturation -- a procedure that has risks, but to date has not harmed her,
her parents say.
While the "Ashley treatment" was first published in the October 2006 issue
of the Archives of Pediatrics & Adolescent Medicine, it wasn't until the
family posted its blog last year that a firestorm erupted in the
blogosphere, with responses from "inhumane" and "perverse" -- to "walk in
our shoes."
"If parents of children like Ashley believe this treatment will improve
their children's quality of life, then they should be diligent and tenacious
in providing it for them," her parents write. "We have a sacred duty to do
what we believe is right for our children."
But in Ashley's case, what her parents thought was right wasn't legal.
In May 2007, Children's Hospital admitted it broke state law by giving
Ashley a hysterectomy without a proper court review. To perform any such
treatment today would require a court order, as well as review by a panel of
experts in medicine and ethics and people with disabilities, says Dr.
Douglas Diekema of Treuman Katz Center for Pediatric Bioethics, the
consulting ethicist on Ashley's case.
So, will doctors stop the growth of more children like Ashley?
Right now, no growth-attenuation therapy is being administered by other
doctors anywhere in the nation, according to pediatric experts. Supporters
wonder whether another factor, the suicide in September of Ashley's
endocrinologist, Dr. Daniel Gunther, may have slowed wider adoption of the
treatment.
"We know from reliable sources his treatment of our daughter was a source of
energy and motivation for him," Ashley's parents write. "He was frustrated
about being blocked from providing this treatment to other children in need.
He strongly believed this treatment should be available to them."
The family appears to be the lone voice with that opinion; CNN shared the
family's comment with Children's Hospital, but did not get a response. In
media reports, colleagues and family members were said to believe Gunther's
suicide was not related to the treatment of the girl.
Another complicating factor -- some doctors remain adamant the treatment
shouldn't be available.
"Adults can consent. But for a child, we're making decisions for them and
hoping in our heart of hearts we are making the right decisions," says Dr.
Nancy Murphy, chairman of the American Academy of Pediatrics Committee on
Children with Disabilities.
Murphy will push for consensus among doctors at a pediatrics conference
later this year, but acknowledges strong discord as critics continue to
insist that keeping children small reduces them to a permanent infant-like
condition, denying the basic human right to experience an adult body, adult
feelings and adult relationships. But for Ashley, that may be moot.
"[This disability] shatters the reason we become parents: to watch kids
grow, to be part of their lives and to launch into their own lives," says
Murphy. "When you have a child with lifelong dependency, you don't get to
launch your kid, and your caregiver options are limited."
But like many other people with disabilities, 43-year-old Anne Rader, who
also has cerebral palsy but in a much less severe form than Ashley's, sees
the treatment as dehumanizing -- and perhaps most significantly --
irrevocable.
"The parents are not seeing the potential of the child; they are seeing a
baby," says Rader. "People with disabilities have to look at the potential
of our lives: of available new technology, new equipment, medical advances.
Things can change so quickly now."
Some ethicists, too, remain staunch in their assessment that the "Ashley
treatment" is a violation of not only human dignity, but also of a
physician's oath to do no harm.
Health Library
a.. MayoClinic.com: Cerebral Palsy
"I think mutilating surgery involving removal of breast buds is indefensible
under any circumstances," says Arthur Caplan, the chairman of the Department
of Medical Ethics and director of the Center for Bioethics at the University
of Pennsylvania. "Growth retardation is not a substitute for adequate home
aides and home assistance."
Ashley's parents remain convinced what they did for Ashley is the most
loving choice they could have made for their daughter and want that for
other disabled children.
"We feel that if our time and effort ended up helping a single pillow
angel... then it is worthwhile."