Re: CNN-Sterlization broke the law

[Guest guest]

That is awful! I could not imagine doing that to my

own child. I know it can get very hard and

frustrating, but your child is your child.

--- Marilyn Pyles <hillbillyhelper2@...> wrote:

> By Amy Burkholder

> CNN

> Adjust font size:

>

>

>

> 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 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. 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. "

> , 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. 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.

> 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 was 6, her uterus and breast

> buds were removed, and she received a high-dose

> estrogen therapy. As a result, was frozen as

> a child. She attained her full growth at 4 feet 5

> inches and 75 pounds, with no reproductive capacity.

> 's parents say that compassion, not

> convenience of care, was their motive.

> Writing on their blog, her parents said, " '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 that drama. '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 's

> developmental state and prognosis ... voluntary

> procreation was not applicable to her case and will

> never be. "

> " Sterilization is not the intent of the '

> 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 . "

> 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 case sends a clear message about the

> rights of the disabled.

> " The implementation of the ' 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 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

> a Zahn. " But they should know that 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

> is doing well in her family's care, which suggests

> to them it was the right thing to do.

> '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 Cohen and senior

> producer Pifer contributed to this report.

>

>

>

> ---------------------------------

> Boardwalk for $500? In 2007? Ha!

> Play Monopoly Here and Now (it's updated for today's

> economy) at Games.

[Guest guest]

That is awful! I could not imagine doing that to my

own child. I know it can get very hard and

frustrating, but your child is your child.

--- Marilyn Pyles <hillbillyhelper2@...> wrote:

> By Amy Burkholder

> CNN

> Adjust font size:

>

>

>

> 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 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. 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. "

> , 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. 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.

> 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 was 6, her uterus and breast

> buds were removed, and she received a high-dose

> estrogen therapy. As a result, was frozen as

> a child. She attained her full growth at 4 feet 5

> inches and 75 pounds, with no reproductive capacity.

> 's parents say that compassion, not

> convenience of care, was their motive.

> Writing on their blog, her parents said, " '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 that drama. '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 's

> developmental state and prognosis ... voluntary

> procreation was not applicable to her case and will

> never be. "

> " Sterilization is not the intent of the '

> 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 . "

> 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 case sends a clear message about the

> rights of the disabled.

> " The implementation of the ' 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 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

> a Zahn. " But they should know that 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

> is doing well in her family's care, which suggests

> to them it was the right thing to do.

> '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 Cohen and senior

> producer Pifer contributed to this report.

>

>

>

> ---------------------------------

> Boardwalk for $500? In 2007? Ha!

> Play Monopoly Here and Now (it's updated for today's

> economy) at Games.

[Guest guest]

You know I try really hard not to make judgments about what a family decides for their disabled child because I have not walked in their shoes. You never know all of the facts and what kind of future the family is working with. You don't know what kind of long term support they have... you don't know how old they are and what kind of strength they have. I know for my own 11 year old who is quickly approaching puberty (it is coming soon!) I have had sleepless nights of what in the world am I going to do. She is not even toilet trained.... her period coming makes me want to cry (again). My daughter has not progressed very much at all... but there is some progression... I am sure as frustrated as I am with very small advancements... I might have to consider something like this if there were absolutely no hope for any improvement. Alyssa is over 80 pounds and wants to be held and carried like a 1 or 2 year old. She does

not understand why we can't just snuggle her up ... she is just physically too big. But she is emotionally in need and want to be like a small toddler. Anyway.. lets not judge too quickly.. you just don't know all the facts and you don't have to live with the decisions they choose. Gray <jgray1025@...> wrote: That is awful! I could not imagine doing that to my own child. I know it can get very hard and frustrating, but your child is your child. --- Marilyn Pyles <hillbillyhelper2 > wrote: > By Amy Burkholder > CNN > Adjust font size: > > > > 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 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. 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. " > , 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. 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. > 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 was 6, her uterus and breast > buds were removed, and she received a high-dose > estrogen therapy. As a result, was frozen as > a child. She attained her full growth at 4 feet 5 > inches and 75 pounds, with no reproductive capacity. > 's parents say that compassion, not > convenience of care, was their motive. > Writing on their blog, her parents said, "'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 that drama. '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 's > developmental state and prognosis ... voluntary > procreation was not applicable to her case and will > never be." > "Sterilization is not the intent of the ' > 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 ." > 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 case sends a clear message about the > rights of the disabled. > "The implementation of the ' 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 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 > a Zahn. "But they should know that 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 > is doing well in her family's care, which suggests > to them it was the right thing to do. >

'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 Cohen and senior > producer Pifer contributed to this report. > > > > --------------------------------- > Boardwalk for $500? In 2007? Ha! > Play Monopoly Here and Now (it's updated for today's > economy) at Games.

Never miss an email again! Toolbar alerts you the instant new Mail arrives. Check it out.

[Guest guest]

You know I try really hard not to make judgments about what a family decides for their disabled child because I have not walked in their shoes. You never know all of the facts and what kind of future the family is working with. You don't know what kind of long term support they have... you don't know how old they are and what kind of strength they have. I know for my own 11 year old who is quickly approaching puberty (it is coming soon!) I have had sleepless nights of what in the world am I going to do. She is not even toilet trained.... her period coming makes me want to cry (again). My daughter has not progressed very much at all... but there is some progression... I am sure as frustrated as I am with very small advancements... I might have to consider something like this if there were absolutely no hope for any improvement. Alyssa is over 80 pounds and wants to be held and carried like a 1 or 2 year old. She does

not understand why we can't just snuggle her up ... she is just physically too big. But she is emotionally in need and want to be like a small toddler. Anyway.. lets not judge too quickly.. you just don't know all the facts and you don't have to live with the decisions they choose. Gray <jgray1025@...> wrote: That is awful! I could not imagine doing that to my own child. I know it can get very hard and frustrating, but your child is your child. --- Marilyn Pyles <hillbillyhelper2 > wrote: > By Amy Burkholder > CNN > Adjust font size: > > > > 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 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. 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. " > , 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. 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. > 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 was 6, her uterus and breast > buds were removed, and she received a high-dose > estrogen therapy. As a result, was frozen as > a child. She attained her full growth at 4 feet 5 > inches and 75 pounds, with no reproductive capacity. > 's parents say that compassion, not > convenience of care, was their motive. > Writing on their blog, her parents said, "'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 that drama. '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 's > developmental state and prognosis ... voluntary > procreation was not applicable to her case and will > never be." > "Sterilization is not the intent of the ' > 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 ." > 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 case sends a clear message about the > rights of the disabled. > "The implementation of the ' 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 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 > a Zahn. "But they should know that 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 > is doing well in her family's care, which suggests > to them it was the right thing to do. >

'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 Cohen and senior > producer Pifer contributed to this report. > > > > --------------------------------- > Boardwalk for $500? In 2007? Ha! > Play Monopoly Here and Now (it's updated for today's > economy) at Games.

Never miss an email again! Toolbar alerts you the instant new Mail arrives. Check it out.

[Guest guest]

DITTO!

You never what what a parent is going through!! Your situation is different from theirs,as theirs is from yours. Never say never.... You never know what you may have to do in your lifetime!

Re: CNN-Sterlization broke the law

You know I try really hard not to make judgments about what a family decides for their disabled child because I have not walked in their shoes. You never know all of the facts and what kind of future the family is working with. You don't know what kind of long term support they have... you don't know how old they are and what kind of strength they have. I know for my own 11 year old who is quickly approaching puberty (it is coming soon!) I have had sleepless nights of what in the world am I going to do. She is not even toilet trained.... her period coming makes me want to cry (again). My daughter has not progressed very much at all... but there is some progression... I am sure as frustrated as I am with very small advancements... I might have to consider something like this if there were absolutely no hope for any improvement. Alyssa is over 80 pounds and wants to be held and carried like a 1 or 2 year old. She does not understand why we can't just snuggle her up ... she is just physically too big. But she is emotionally in need and want to be like a small toddler. Anyway.. lets not judge too quickly.. you just don't know all the facts and you don't have to live with the decisions they choose. Gray <jgray1025 > wrote:

That is awful! I could not imagine doing that to myown child. I know it can get very hard andfrustrating, but your child is your child.--- Marilyn Pyles <hillbillyhelper2 > wrote:> By Amy Burkholder> CNN> Adjust font size:> > > > 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 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. 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. "> , 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. 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. > 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 was 6, her uterus and breast> buds were removed, and she received a high-dose> estrogen therapy. As a result, was frozen as> a child. She attained her full growth at 4 feet 5> inches and 75 pounds, with no reproductive capacity.> 's parents say that compassion, not> convenience of care, was their motive. > Writing on their blog, her parents said, "'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 that drama. '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 's> developmental state and prognosis ... voluntary> procreation was not applicable to her case and will> never be." > "Sterilization is not the intent of the '> 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 ." > 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 case sends a clear message about the> rights of the disabled. > "The implementation of the ' 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 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> a Zahn. "But they should know that 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 > is doing well in her family's care, which suggests> to them it was the right thing to do. > '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 Cohen and senior> producer Pifer contributed to this report.> > > > ---------------------------------> Boardwalk for $500? In 2007? Ha! > Play Monopoly Here and Now (it's updated for today's> economy) at Games.

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[Guest guest]

DITTO!

You never what what a parent is going through!! Your situation is different from theirs,as theirs is from yours. Never say never.... You never know what you may have to do in your lifetime!

Re: CNN-Sterlization broke the law

You know I try really hard not to make judgments about what a family decides for their disabled child because I have not walked in their shoes. You never know all of the facts and what kind of future the family is working with. You don't know what kind of long term support they have... you don't know how old they are and what kind of strength they have. I know for my own 11 year old who is quickly approaching puberty (it is coming soon!) I have had sleepless nights of what in the world am I going to do. She is not even toilet trained.... her period coming makes me want to cry (again). My daughter has not progressed very much at all... but there is some progression... I am sure as frustrated as I am with very small advancements... I might have to consider something like this if there were absolutely no hope for any improvement. Alyssa is over 80 pounds and wants to be held and carried like a 1 or 2 year old. She does not understand why we can't just snuggle her up ... she is just physically too big. But she is emotionally in need and want to be like a small toddler. Anyway.. lets not judge too quickly.. you just don't know all the facts and you don't have to live with the decisions they choose. Gray <jgray1025 > wrote:

That is awful! I could not imagine doing that to myown child. I know it can get very hard andfrustrating, but your child is your child.--- Marilyn Pyles <hillbillyhelper2 > wrote:> By Amy Burkholder> CNN> Adjust font size:> > > > 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 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. 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. "> , 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. 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. > 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 was 6, her uterus and breast> buds were removed, and she received a high-dose> estrogen therapy. As a result, was frozen as> a child. She attained her full growth at 4 feet 5> inches and 75 pounds, with no reproductive capacity.> 's parents say that compassion, not> convenience of care, was their motive. > Writing on their blog, her parents said, "'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 that drama. '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 's> developmental state and prognosis ... voluntary> procreation was not applicable to her case and will> never be." > "Sterilization is not the intent of the '> 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 ." > 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 case sends a clear message about the> rights of the disabled. > "The implementation of the ' 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 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> a Zahn. "But they should know that 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 > is doing well in her family's care, which suggests> to them it was the right thing to do. > '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 Cohen and senior> producer Pifer contributed to this report.> > > > ---------------------------------> Boardwalk for $500? In 2007? Ha! > Play Monopoly Here and Now (it's updated for today's> economy) at Games.

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[Guest guest]

I am sorry, I wasn't trying to be judgemental about

them - I just can't imagine doing that to my child.

Of course, my child is not in the same condition as

the one in that story. No intent to offend anyone

here and I am sorry if I did.

--- Carmen Long <houseofsix@...> wrote:

> You know I try really hard not to make judgments

> about what a family decides for their disabled child

> because I have not walked in their shoes. You never

> know all of the facts and what kind of future the

> family is working with. You don't know what kind of

> long term support they have... you don't know how

> old they are and what kind of strength they have.

>

> I know for my own 11 year old who is quickly

> approaching puberty (it is coming soon!) I have had

> sleepless nights of what in the world am I going to

> do. She is not even toilet trained.... her period

> coming makes me want to cry (again). My daughter

> has not progressed very much at all... but there is

> some progression... I am sure as frustrated as I am

> with very small advancements... I might have to

> consider something like this if there were

> absolutely no hope for any improvement.

>

> Alyssa is over 80 pounds and wants to be held and

> carried like a 1 or 2 year old. She does not

> understand why we can't just snuggle her up ... she

> is just physically too big. But she is emotionally

> in need and want to be like a small toddler.

>

> Anyway.. lets not judge too quickly.. you just don't

> know all the facts and you don't have to live with

> the decisions they choose.

>

> Gray <jgray1025@...> wrote:

> That is awful! I could not

> imagine doing that to my

> own child. I know it can get very hard and

> frustrating, but your child is your child.

>

> --- Marilyn Pyles <hillbillyhelper2@...>

> wrote:

>

> > By Amy Burkholder

> > CNN

> > Adjust font size:

> >

> >

> >

> > 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 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. 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. "

> > , 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. 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.

> > 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 was 6, her uterus and breast

> > buds were removed, and she received a high-dose

> > estrogen therapy. As a result, was frozen

> as

> > a child. She attained her full growth at 4 feet 5

> > inches and 75 pounds, with no reproductive

> capacity.

> > 's parents say that compassion, not

> > convenience of care, was their motive.

> > Writing on their blog, her parents said,

> " '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 that drama.

> '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 's

> > developmental state and prognosis ... voluntary

> > procreation was not applicable to her case and

> will

> > never be. "

> > " Sterilization is not the intent of the '

> > 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 . "

> > 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 case sends a clear message about the

> > rights of the disabled.

> > " The implementation of the ' 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 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

> > a Zahn. " But they should know that has

> a

> > right to develop as a human being. "

> > WPAS says it has no plans to take legal action

> > against the hospital.

>

=== message truncated ===

[Guest guest]

You may want to read the family's website. It is difficult not to judge when you first read about the treatment. However, after reading the website I feel for this family and know that in their minds they did the right thing.

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