D. Armenta
PlagmanSurgery to Freeze 9-Year Old as Child Raises Ethical Questions
Ashley, a young girl who suffers from static encephalopathy (i.e. unchanging brain injury), who would never be able to walk or talk and was entirely dependent on her parents, had surgery back in 2004 to freeze her growth as a child.
According to the Washington Protection and Advocacy System (WPAS), which is a private group granted investigative authority for disabled people, the Seattle Children's Hospital and Regional Medical Center "violated the constitutional and common law rights" of Ashley when they performed a hysterectomy. Because the surgery took away Ashley's ability to bear children, the case has raised medical ethics questions, as well as outraged disability and feminist groups, all of whom feel that those who are unable to feed themselves should have the same rights in deciding whether or not to have children as everyone else. "Ashley is a strong, young woman who will never even have the choice in deciding if she wants to bear life beyond her own," said Katrina Doubtfire, spokeswoman for the Women's Associated of America, or WAA, "her parents just wanted to keep her small forever for their own convenience, as if she were my puppy who got fat and ugly when he grew up and he's still not house-broken."
Said Dr. Douglas Diekema, "Her cognitive function was the equivalent of that of an infant, unlikely to ever change. But do I think she should be given the chance to raise a family? I'm not an ethics committee, that's not my call, and it wasn't even the point of the procedure. But oh my God no."
An ethics panel was set up by the hospital to discuss the extreme request made by the parents to keep Ashley small forever via growth attenuation therapy, and working with Dr. Daniel Gunther, a pediatric endocrinologist, the panel agreed that the treatment was in the girl's best interest.
Nevertheless, according to Mark Stroh, executive director of the WPAS, "Washington law specifically prohibits the sterilization of minors with developmental disabilities without zealous advocacy on their behalf and court approval. It's not a question of logic, or what's 'in the child's best interest,' or even that sterilization wasn't the intent of the operation; her uterus could be one giant tumor, but that doesn't mean we can just take it out to save her life without her saying it's okay, that's why we have laws."
Hoping the special-interest groups would go away, the hospital admitted its error, and assured everyone concerned that not only would they be implementing changes to make sure that disabled children are never again sterilized without a court order, they will also waste everyone's time and money by seeking court approval for any other procedures involved in growth attenuation therapy.
"We deeply regret that a court order was not obtained," said Dr. David Fisher, the Children's Hospital's medical director, "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 assumed a lawyer who understands the law would understand it better than a special-interest group taking the case way out of context, obviously we were wrong. We take full responsibility."
Last January, Dr. Diekema said his ethics committee struggled with whether they should allow the hysterectomy, but ultimately sided with the family's attorney and common sense. "As far as removing her uterus, there are many profoundly disabled children who are traumatized by menstruation. I know most women love menstruating, God knows I wish I could, but the family wanted to spare Ashley that drama. [She's] a little girl who already had experienced being terrified of blood."
Ashley's parents have constantly defended their actions via their blog to high school dropouts who continued to question the procedure, explaining why they wanted the surgery. They wrote, "Given Ashley's developmental state and prognosis... voluntary procreation was not applicable to her case and never will be."
Feminists groups had a field day with this entry, citing the parents' bias towards women that "society" deems undesirable. "This is so typical of our patriarchal society," said another WAA spokesperson, "a couple of people determine a woman isn't good enough to have kids, or that no one would want to have children with her, and bam, they sterilize her just like that. This is the kind of behavior we have to put a stop to before all mentally ill women incapable of feeding themselves are no longer allowed to reproduce."
Ashley's parents continued by writing that "sterilization is not the intent of the 'Ashley Treatment,' but a byproduct of it." The parents also mentioned that although they support laws against involuntary sterilization, they feel the law is "too broadly based to distinguish between people who are or can become capable of decision-making and those who have a grave and unchanging medical condition such as Ashley."
Dr. Diekema also told CNN that their ethics committee had accounted for the fact that the law in question was not very clear regarding the necessity for a court order in the case of someone who would never be able to consent to the procedure.
But Arthur Caplan, a bioethicist who is apparently nationally known, said, "I absolutely agree that this procedure should have been reviewed by a court. Discussing the matter with a lawyer and forming an ethics committee to rule on the matter is not enough due process to look out for the rights of a young girl. This is not a decision that can be made by loving parents, doctors, or ethics committees full of doctors; this should be left up to the courts, and hopefully, a judge with no medical background whatsoever. My parents had me circumcised when I was a baby and didn't even bother to get a court order, much less my consent, cause I don't remember signing nothin'."
Stephen Rosenbaum, a disabilities attorney, agreed, saying "I have a lot of compassion for this family. But they should know that Ashley has a right to develop into a human being, regardless of the fact that her life would be infinitely worse not only for her but for her family. This case is about discrimination; just because what happened was in the best interest of the child doesn't mean it was in the best interest of handicapped people everywhere. She should've at least been given the opportunity to martyr herself for her cause."
Nevertheless, people with absolutely no medical background or any information on the story other than seeing the words "involuntary sterilization" continue to pose ethical questions.
But given the devotion of Ashley's parents, and reports from doctors involved in the procedure who have said that Ashley is doing very well, this procedure, which was clearly the right thing to do, in the end may have been the right thing to do.
According to the Washington Protection and Advocacy System (WPAS), which is a private group granted investigative authority for disabled people, the Seattle Children's Hospital and Regional Medical Center "violated the constitutional and common law rights" of Ashley when they performed a hysterectomy. Because the surgery took away Ashley's ability to bear children, the case has raised medical ethics questions, as well as outraged disability and feminist groups, all of whom feel that those who are unable to feed themselves should have the same rights in deciding whether or not to have children as everyone else. "Ashley is a strong, young woman who will never even have the choice in deciding if she wants to bear life beyond her own," said Katrina Doubtfire, spokeswoman for the Women's Associated of America, or WAA, "her parents just wanted to keep her small forever for their own convenience, as if she were my puppy who got fat and ugly when he grew up and he's still not house-broken."
Said Dr. Douglas Diekema, "Her cognitive function was the equivalent of that of an infant, unlikely to ever change. But do I think she should be given the chance to raise a family? I'm not an ethics committee, that's not my call, and it wasn't even the point of the procedure. But oh my God no."
An ethics panel was set up by the hospital to discuss the extreme request made by the parents to keep Ashley small forever via growth attenuation therapy, and working with Dr. Daniel Gunther, a pediatric endocrinologist, the panel agreed that the treatment was in the girl's best interest.
Nevertheless, according to Mark Stroh, executive director of the WPAS, "Washington law specifically prohibits the sterilization of minors with developmental disabilities without zealous advocacy on their behalf and court approval. It's not a question of logic, or what's 'in the child's best interest,' or even that sterilization wasn't the intent of the operation; her uterus could be one giant tumor, but that doesn't mean we can just take it out to save her life without her saying it's okay, that's why we have laws."
Hoping the special-interest groups would go away, the hospital admitted its error, and assured everyone concerned that not only would they be implementing changes to make sure that disabled children are never again sterilized without a court order, they will also waste everyone's time and money by seeking court approval for any other procedures involved in growth attenuation therapy.
"We deeply regret that a court order was not obtained," said Dr. David Fisher, the Children's Hospital's medical director, "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 assumed a lawyer who understands the law would understand it better than a special-interest group taking the case way out of context, obviously we were wrong. We take full responsibility."
Last January, Dr. Diekema said his ethics committee struggled with whether they should allow the hysterectomy, but ultimately sided with the family's attorney and common sense. "As far as removing her uterus, there are many profoundly disabled children who are traumatized by menstruation. I know most women love menstruating, God knows I wish I could, but the family wanted to spare Ashley that drama. [She's] a little girl who already had experienced being terrified of blood."
Ashley's parents have constantly defended their actions via their blog to high school dropouts who continued to question the procedure, explaining why they wanted the surgery. They wrote, "Given Ashley's developmental state and prognosis... voluntary procreation was not applicable to her case and never will be."
Feminists groups had a field day with this entry, citing the parents' bias towards women that "society" deems undesirable. "This is so typical of our patriarchal society," said another WAA spokesperson, "a couple of people determine a woman isn't good enough to have kids, or that no one would want to have children with her, and bam, they sterilize her just like that. This is the kind of behavior we have to put a stop to before all mentally ill women incapable of feeding themselves are no longer allowed to reproduce."
Ashley's parents continued by writing that "sterilization is not the intent of the 'Ashley Treatment,' but a byproduct of it." The parents also mentioned that although they support laws against involuntary sterilization, they feel the law is "too broadly based to distinguish between people who are or can become capable of decision-making and those who have a grave and unchanging medical condition such as Ashley."
Dr. Diekema also told CNN that their ethics committee had accounted for the fact that the law in question was not very clear regarding the necessity for a court order in the case of someone who would never be able to consent to the procedure.
But Arthur Caplan, a bioethicist who is apparently nationally known, said, "I absolutely agree that this procedure should have been reviewed by a court. Discussing the matter with a lawyer and forming an ethics committee to rule on the matter is not enough due process to look out for the rights of a young girl. This is not a decision that can be made by loving parents, doctors, or ethics committees full of doctors; this should be left up to the courts, and hopefully, a judge with no medical background whatsoever. My parents had me circumcised when I was a baby and didn't even bother to get a court order, much less my consent, cause I don't remember signing nothin'."
Stephen Rosenbaum, a disabilities attorney, agreed, saying "I have a lot of compassion for this family. But they should know that Ashley has a right to develop into a human being, regardless of the fact that her life would be infinitely worse not only for her but for her family. This case is about discrimination; just because what happened was in the best interest of the child doesn't mean it was in the best interest of handicapped people everywhere. She should've at least been given the opportunity to martyr herself for her cause."
Nevertheless, people with absolutely no medical background or any information on the story other than seeing the words "involuntary sterilization" continue to pose ethical questions.
But given the devotion of Ashley's parents, and reports from doctors involved in the procedure who have said that Ashley is doing very well, this procedure, which was clearly the right thing to do, in the end may have been the right thing to do.
The Florida Keys and Everglades
The Black Sheep Chronicles
What constitutes bad manners?
The male mystique
Debate Fan
L.A.M.P.