Surgery To Stunt Girl's Growth Sparks Debate

[ExtraHye]

Surgery to Stunt Girl's Growth Sparks Debate

By LINDSEY TANNER, AP

 

CHICAGO (Jan. 4) - In a case fraught with ethical questions, the parents of a severely mentally and physically disabled child have stunted her growth to keep their little "pillow angel" a manageable and more portable size.

 

The bedridden 9-year-old girl had her uterus and breast tissue removed at a Seattle hospital and received large doses of hormones to halt her growth. She is now 4-foot-5; her parents say she would otherwise probably reach a normal 5-foot-6.

 

The case has captured attention nationwide and abroad via the Internet, with some decrying the parents' actions as perverse and akin to eugenics. Some ethicists question the parents' claim that the drastic treatment will benefit their daughter and allow them to continue caring for her at home.

 

University of Pennsylvania ethicist Art Caplan said the case is troubling and reflects "slippery slope" thinking among parents who believe "the way to deal with my kid with permanent behavioral problems is to put them into permanent childhood."

 

Right or wrong, the couple's decision highlights a dilemma thousands of parents face in struggling to care for severely disabled children as they grow up.

 

"This particular treatment, even if it's OK in this situation, and I think it probably is, is not a widespread solution and ignores the large social issues about caring for people with disabilities," Dr. Joel Frader, a medical ethicist at Chicago's Children's Memorial Hospital, said Thursday. "As a society, we do a pretty rotten job of helping caregivers provide what's necessary for these patients."

 

The case involves a girl identified only as Ashley on a blog her parents created after her doctors wrote about her treatment in October's Archives of Pediatrics & Adolescent Medicine. The journal did not disclose the parents' names or where they live; the couple do not identify themselves on their blog, either.

 

Shortly after birth, Ashley had feeding problems and showed severe developmental delays. Her doctors diagnosed static encephalopathy, which means severe brain damage. They do not know what caused it.

 

Her condition has left her in an infant state, unable to sit up, roll over, hold a toy or walk or talk. Her parents say she will never get better. She is alert, startles easily, and smiles, but does not maintain eye contact, according to her parents, who call the brown-haired little girl their "pillow angel."

 

She goes to school for disabled children, but her parents care for her at home and say they have been unable to find suitable outside help.

 

An editorial in the medical journal called "the Ashley treatment" ill-advised and questioned whether it will even work. But her parents say it has succeeded so far.

 

She had surgery in July 2004 and recently completed the hormone treatment. She weighs about 65 pounds, and is about 13 inches shorter and 50 pounds lighter than she would be as an adult, according to her parents' blog.

 

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

 

Also, Ashley's parents say keeping her small will reduce the risk of bedsores and other conditions that can afflict bedridden patients. In addition, they say preventing her from going through puberty means she won't experience the discomfort of periods or grow breasts that might develop breast cancer, which runs in the family.

 

"Even though caring for Ashley involves hard and continual work, she is a blessing and not a burden," her parents say. Still, they write, "Unless you are living the experience ... you have no clue what it is like to be the bedridden child or their caregivers."

 

Caplan questioned how preventing normal growth could benefit the patient. Treatment that is not for a patient's direct benefit "only seems wrong to me," the ethicist said.

 

Dr. Douglas Diekema, an ethicist at Children's Hospital and Regional Medical Center in Seattle, where Ashley was treated, said he met with the parents and became convinced they were motivated by love and the girl's best interests.

 

Diekema said he was mainly concerned with making sure the little girl would actually benefit and not suffer any harm from the treatment. She did not, and is doing well, he said.

 

"The more her parents can be touching her and caring for her ... and involving her in family activities, the better for her," he said. "The parents' argument was, `If she's smaller and lighter, we will be able to do that for a longer period of time."'

 

 

01/04/07 17:33 EST

[ExtraHye]

How do you add a poll??? I can't seem to do it.

 

Anyway what do you guys think?

[Anoushik]

I think it's an incredibly sad situation. I really can't offer an opinion regarding the surgery. I have no idea what the parents are going through on a daily basis, caring for a child who's permanently left in an infant state.

[SanVal]

I don't think that caring for such a child would be considerably easier if she's 4"5 as opposed to 5"6. The bulk of the problems the parents experience must be due to the fact that she's mentally and physically disabled; her size can't be such a big problem. If doctors had predicted that she would otherwise be a giant, the parents' choice would've been easier to justify.

[Sip]

This is an excellent example of why late term abortion should be legal. I think the parents should have the option to abort this child now.

[Aubépine]

That's called murder I think.

[Aubépine]

They have late term abortions in China until the 8th month of pregnancy. Which still makes it murder, but China is hardly a shining example.

[Aubépine]

I don't think that caring for such a child would be considerably easier if she's 4"5 as opposed to 5"6. The bulk of the problems the parents experience must be due to the fact that she's mentally and physically disabled; her size can't be such a big problem. If doctors had predicted that she would otherwise be a giant, the parents' choice would've been easier to justify.

 

I have read the justifications in a paper here. She is going to have the same bedsores that other bedridden patients have so size doesn't matter. People really have their priorities wrong. They recently banned Human Chimera research in the UK, because some religious wackos think they are going to create hybrids à la Dr. Moreau. Apparently they have never heared of the Vanishing Twin phenomenon. Research which will have enormous implications for many people will be denied for them. But what do I know, to each his own.

[Sip]

That's called murder I think.

 

Ok fine. Then such "murders" should be legal. Any human who is a total drain on his or her care givers with no potential to ever contribute anything to society should be legal to "abort" or "murder" or whatever you want to call it. And this should be left at the discretion of the care givers. I think they should be allowed to put an ad in papers or some special websites to see if there is anyone who is willing to assume responsiblity of FULLY taking care of the said individual. If within some time (let's say 6 months) no one steps forward to take on the task, then the primary care givers should have the option to "pull the plug" so to say.

 

Also, if they so choose, they may decide they don't want to subject the child and themselves to a life time of torture and again pull the plug. Heck we are kinder to messed up horses and dogs than to our damn children.

 

Note that I am NOT advocating killing all children with disabilities. If you are a parent who are willing to take care of them for years and years till they die a premature death, then more power to you! I am just saying that parents should have the OPTION to abort a retard even in very very late terms after birth.

Edited January 6, 2007 by Sip

[Aubépine]

What you ask for is legally not permissible. Not to mention morally. You can abort them in early pregnancy if you wish. Once a child is there you will have to deal with it (not you personally) some way or the other. Or let some other institution take care of the child if they are not up to it psychologically or financially. Otherwise it is murder. The Third Reich doesn't exist anymore.

[neko]

It uncomfortably sounds more like some adults wanting a pet small enough and house-trained enough for their appartment. Edited January 7, 2007 by neko

[Sip]

What you ask for is legally not permissible...

 

That's why I say it SHOULD be legal The "Third Reich" comment is only relevant if you are willing to compare retarded kids to non whites

[Anoushik]

This is an excellent example of why late term abortion should be legal. I think the parents should have the option to abort this child now.

No, now is too late It wouldn't be right, it'd be murder.

[DominO123]

This is an excellent example of why late term abortion should be legal. I think the parents should have the option to abort this child now.

 

Do you even know the risks of late term abortion to the mother? It is really a dilema? If abortion left early in the process based on a genetic test, the dangers of transforming the process to some kind of eugenics is pretty much high, playing with the gene pool. If later, it is a high risk for the mother. It is not as simple as you propose it. In both situation it could lead to an eugenical system which is very bad for evolution. Just an example, do you know that a gene associated with myopia is also associated with intelligence? A mutation from a so-called "unhealty" segment could serve in the process of evolution. We are at this stage not well prepared neither know enough about the repercutions to permit in the open mass abortion justifying it by the well being of the parent and the supposed best of the child. Believe me, it isen't as simple as you present it.

[DominO123]

That's why I say it SHOULD be legal The "Third Reich" comment is only relevant if you are willing to compare retarded kids to non whites

 

I do believe that the Third Reich comment is right on track no matter the way you can take it. It's consequences inevitably could be a form of eugenics, the form that the Third Reich was specifically proposing, extended not only to "retarded kids."

[DominO123]

I will also add, that the retarded kid is not necessarly suffering, in fact he is suffering probably less than us.

 

A chimp is much less intelligent than humans, we don't go on starting to destroy every other animals beside us, simply because they are less intelligent than us. We must provide all the ressources in the world for disabled children, the parents should be given all the help they need to not suffer, even placing their child in a good institution. That parents are thinking such options is because they are not well informed, either believing that their child will for sure suffer(mostly lacking ressources), or/and they will suffer. I

 

We much preserve the gene pool, and gene pool. At present researchers are even finding utilities using viruses gene pools to fight cancer.

Edited January 7, 2007 by QueBeceR

[Sip]

Quebecer .. how many bed-ridden retarded kids who can't move or communicate do you know that grow up to have kids? How can they possibly impact the evolutionary process?

 

By the way, by "late late term abortion", I mean years AFTER birth

[MosJan]

Surgery to Stunt Girl's Growth Sparks Debate

By LINDSEY TANNER, AP

 

CHICAGO (Jan. 4) - In a case fraught with ethical questions, the parents of a severely mentally and physically disabled child have stunted her growth to keep their little "pillow angel" a manageable and more portable size.

 

The bedridden 9-year-old girl had her uterus and breast tissue removed at a Seattle hospital and received large doses of hormones to halt her growth. She is now 4-foot-5; her parents say she would otherwise probably reach a normal 5-foot-6.

 

The case has captured attention nationwide and abroad via the Internet, with some decrying the parents' actions as perverse and akin to eugenics. Some ethicists question the parents' claim that the drastic treatment will benefit their daughter and allow them to continue caring for her at home.

 

University of Pennsylvania ethicist Art Caplan said the case is troubling and reflects "slippery slope" thinking among parents who believe "the way to deal with my kid with permanent behavioral problems is to put them into permanent childhood."

 

Right or wrong, the couple's decision highlights a dilemma thousands of parents face in struggling to care for severely disabled children as they grow up.

 

"This particular treatment, even if it's OK in this situation, and I think it probably is, is not a widespread solution and ignores the large social issues about caring for people with disabilities," Dr. Joel Frader, a medical ethicist at Chicago's Children's Memorial Hospital, said Thursday. "As a society, we do a pretty rotten job of helping caregivers provide what's necessary for these patients."

 

The case involves a girl identified only as Ashley on a blog her parents created after her doctors wrote about her treatment in October's Archives of Pediatrics & Adolescent Medicine. The journal did not disclose the parents' names or where they live; the couple do not identify themselves on their blog, either.

 

Shortly after birth, Ashley had feeding problems and showed severe developmental delays. Her doctors diagnosed static encephalopathy, which means severe brain damage. They do not know what caused it.

 

Her condition has left her in an infant state, unable to sit up, roll over, hold a toy or walk or talk. Her parents say she will never get better. She is alert, startles easily, and smiles, but does not maintain eye contact, according to her parents, who call the brown-haired little girl their "pillow angel."

 

She goes to school for disabled children, but her parents care for her at home and say they have been unable to find suitable outside help.

 

An editorial in the medical journal called "the Ashley treatment" ill-advised and questioned whether it will even work. But her parents say it has succeeded so far.

 

She had surgery in July 2004 and recently completed the hormone treatment. She weighs about 65 pounds, and is about 13 inches shorter and 50 pounds lighter than she would be as an adult, according to her parents' blog.

 

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

 

Also, Ashley's parents say keeping her small will reduce the risk of bedsores and other conditions that can afflict bedridden patients. In addition, they say preventing her from going through puberty means she won't experience the discomfort of periods or grow breasts that might develop breast cancer, which runs in the family.

 

"Even though caring for Ashley involves hard and continual work, she is a blessing and not a burden," her parents say. Still, they write, "Unless you are living the experience ... you have no clue what it is like to be the bedridden child or their caregivers."

 

Caplan questioned how preventing normal growth could benefit the patient. Treatment that is not for a patient's direct benefit "only seems wrong to me," the ethicist said.

 

Dr. Douglas Diekema, an ethicist at Children's Hospital and Regional Medical Center in Seattle, where Ashley was treated, said he met with the parents and became convinced they were motivated by love and the girl's best interests.

 

Diekema said he was mainly concerned with making sure the little girl would actually benefit and not suffer any harm from the treatment. She did not, and is doing well, he said.

 

"The more her parents can be touching her and caring for her ... and involving her in family activities, the better for her," he said. "The parents' argument was, `If she's smaller and lighter, we will be able to do that for a longer period of time."'

01/04/07 17:33 EST

 

 

all i see is a doctor/s who have found a way to make extra $$$ / a loop hole to drain more money form the system and the family....

 

if the person is in vegetative stat and has no need of the body parts and doctors are cuting some of them out - the same Way the parents / family should have the right to eliminate the life of the person who is being slowly dismantled / altered - to make it more portable or manageable - if you ask me the only Doctor that this people need to talk is Dr. Kevorkyan - save the human from suffering and humiliation if there is no hope for them

[DominO123]

Quebecer .. how many bed-ridden retarded kids who can't move or communicate do you know that grow up to have kids? How can they possibly impact the evolutionary process?

 

By the way, by "late late term abortion", I mean years AFTER birth

 

After birth, if they can't have kids, they won't have any effects. But they still contain a gene pool which should be preserved, could serve in the future.

 

As for after birth, it is murder, plain and simple.

[nairi]

Domino, the gene pool can be stored in different ways, without the person necessarily being alive.

 

Sip: how do you know for sure that a physically healthy child will contribute to society? I'm increasingly beginning to believe that having children is an extremely selfish act. Let's face it: after the cuddle stage (baby to toddler) is over, we are thrown into a lifelong controlled prison over which we have absolutely no control. First our parents, who restrict us from our freedom, then school, and then work to survive. Why would anyone want to expose another generation to this miserable existence?

[DominO123]

Fadi, the gene pool can be stored in different ways, without the person necessarily being alive.

So lets exterminate the entire civilisation. Afteral like you said, it is such a miserable existance.

[Em]

Having seen a severly autistic and mentally handicapped child grow up in front of my eyes to become a 20 year little boy, I have to say it is extremely hard to pick sides. Many people do not have the strength and patience to raise such children. But most human beings with a conscience and heart will find it hard to kill or humanely put to sleep their baby/child. Sip jan, I know you will find it teribbly cliche, but you are not a parent, and especially not a mother. You are looking at it from a black and white perspective.

 

These parents should not have had the right to mutilate their own child. Aren't they playing God? And isn't it clear who benefits most from these "alterations"? Why wasn't prenatal testing done?

 

I can agree as far as teminating the pregnancy if it is found out early on that the child will be handicapped or retarded. Believe me it is hard enough caring for and raising a normal healthy child. However, if the parents choose to bring the child into the world and care for him/her at home, then they should accept the child "as is" and refrain from making alterations and specifications which suite them. After all, even retarded children born into the world have a soul.

 

BTW.....the people I know who care for the autistic 20 yr old are very devoted and loving parents. They are both somewhat disabled themselves, and in Soviet times they were discouraged from becoming pregnant, but they wanted to have a child more than anything in the world. If you ask them, they have no regrets, and they love their child and take excellent care of him.