Surgery to stunt girl’s growth sparks debate
SuzannePjam
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Surgery to stunt girl’s growth sparks debate
Parents say drastic treatment allows them to take better care of their child
http://www.msnbc.msn.com/id/16473471/
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.
Some ethicists question the parents’ claim that the drastic treatment will benefit their daughter and allow them to continue caring for her at home.
The case has captured attention nationwide and abroad. “Offensive if not perverse,” wrote one person on MSNBC.com's bulletin board. “This smacks of eugenics, but I understand the parents thought process,” another wrote.
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.
Left in an infant state
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 says 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.
University of Pennsylvania bioethicist and MSNBC.com columnist Art Caplan said the case is troubling and questioned how preventing normal growth could benefit the patient. Treatment that is not for a patient’s direct benefit “only seems wrong to me,” Caplan said.
But Dr. Benjamin Wilfond, a pediatric bioethicist at Children’s Hospital, said that while he "was a little startled" when he first learned of Ashley’s case, he understood the parents’ decision.
"In this case, being short is a benefit to the child," Wilfond told NBC affiliate KING-TV of Seattle. "There are other parents that make decisions to make their children taller because that may be a benefit to the child. And so I think what all these cases have in common is an intention to help the child."
Comfort and convenience cited
Ashley’s parents say keeping her small will help reduce risks for bedsores and other conditions that can afflict bedridden patients. Also, they say preventing her from going through puberty means she won’t experience the discomfort of having periods or growing 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’ blog says. Still, they wrote, “Unless you are living the experience ... you have no clue what it is like to be the bedridden child or their caregivers."
Parents say drastic treatment allows them to take better care of their child
http://www.msnbc.msn.com/id/16473471/
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.
Some ethicists question the parents’ claim that the drastic treatment will benefit their daughter and allow them to continue caring for her at home.
The case has captured attention nationwide and abroad. “Offensive if not perverse,” wrote one person on MSNBC.com's bulletin board. “This smacks of eugenics, but I understand the parents thought process,” another wrote.
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.
Left in an infant state
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 says 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.
University of Pennsylvania bioethicist and MSNBC.com columnist Art Caplan said the case is troubling and questioned how preventing normal growth could benefit the patient. Treatment that is not for a patient’s direct benefit “only seems wrong to me,” Caplan said.
But Dr. Benjamin Wilfond, a pediatric bioethicist at Children’s Hospital, said that while he "was a little startled" when he first learned of Ashley’s case, he understood the parents’ decision.
"In this case, being short is a benefit to the child," Wilfond told NBC affiliate KING-TV of Seattle. "There are other parents that make decisions to make their children taller because that may be a benefit to the child. And so I think what all these cases have in common is an intention to help the child."
Comfort and convenience cited
Ashley’s parents say keeping her small will help reduce risks for bedsores and other conditions that can afflict bedridden patients. Also, they say preventing her from going through puberty means she won’t experience the discomfort of having periods or growing 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’ blog says. Still, they wrote, “Unless you are living the experience ... you have no clue what it is like to be the bedridden child or their caregivers."
"Where there is sacrifice there is someone collecting the sacrificial offerings."-- Ayn Rand
"Some of my friends sit around every evening and they worry about the times ahead,
But everybody else is overwhelmed by indifference and the promise of an early bed..."-- Elvis Costello
"Some of my friends sit around every evening and they worry about the times ahead,
But everybody else is overwhelmed by indifference and the promise of an early bed..."-- Elvis Costello
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Comments
Here is their blog.
http://ashleytreatment.spaces.live.com/
Oh good. I thought maybe it was just me. At first I thought WTF! But then I read what the parents had to say and I could see their point of view.
Overall, I'm also with this decision, I think. At first, like others, I was outraged. After reading the blog, I was thinking 'Yes, OK, I understand that, it's maybe the best decision.'
However, this comment from the parents later on sounded a bit weird, and now I'm not sure:
'Furthermore, given Ashley’s mental age a nine and a half year old body is more appropriate and more dignified than a fully grown female body.'
Wtf? Why does 'mental age' have any correlation with the appropriate appearance of one's adult body?
- the great Sir Leo Harrison
I've heard of a woman who was put on hormone pills before she was a teenager because her parents thought she would be too tall. Didn't work, but what mindset would put a child on hormones to stop growth is beyond me. There is no medical benefit, no proof that this would help the child.
Complete disregard for the child, absolutely turned her into meat. I haven't taken care of a child with issues, but I tell you when I came out of open heart surgery, and there were tubes in every part of me that a tube can fit, I saw my mom and there was no fucking way that woman was going to give up on me. No fucking way! This is atrocious!
The risk I took was calculated, but man, am I bad at math - The Mincing Mockingbird
I think you've got a reading comprehension problem. The parents are absolutely not giving up on the child. In fact, they're trying to do what they can to ensure that they will be able to continue to give the child the love and support she needs. The child's mind in undeveloped, and is unable to do anything for herself. As her body gets bigger, things like transporting, bathing, going outside, getting into bed, etc... become a larger burden, to the point where the mother won't be able to take the child in her arms, and would likely have to hire people to provide the care. It is hoped that this procedure will allow the parents to continue to be the caregiver. It sounds exactly the opposite of giving up. And I'm sorry you had a bad experience in the hospital, but to say that "any hospital experience...is a degredation to the human spirit" is to completely ingore the thousands of lives that are saved every single day.
mother won't be able to take the child in her arms, and would likely have to hire people to provide the care. Well, how many parents hold their teenagers in their arms. You would think twice about a parent who still treats a growing child as a baby. They definitely gave up, they gave the power to the hospitals to cut that kid up. Just the mindset - please cut my kid up, and reduce her to a state that is less than human (as humans should have the right to grow) and give her back so we can still treat her as a baby. If others are able to care better for the child as she grows, then why wouldn't they want to give her the best care? I think the reason some may have stated would be finances, but maybe the child could get state care, which may not be the best, but they don't have to cut the kid up. Of course how expensive was the surgery and hormone treatments to begin with? This was wrong. My reading comprehension is just fine. I've heard of parents like that. They gave up.
The risk I took was calculated, but man, am I bad at math - The Mincing Mockingbird
This is why I questioned your reading comprehension. Your last sentence above demonstrates that you have not understood this issue even remotely. We're not talking about a normal child growing into her teenage years. We're talking about a child with the brain functions of an infant and the body of 9 year old. I know my teenagers are able to bath and feed themselves, and can use the toilet when they need to. I don't need to carry them in my arms to the bathroom, to bed, to the car. I don't need to feed them and bathe them. But the case in point references a child who can do none of that on her own, and never will be able to. So while her functions won't improve, her growth will prohibit her parents from continuing to give her the same level of care.
The risk I took was calculated, but man, am I bad at math - The Mincing Mockingbird
Are you serious? Why have you come in here twice to add nothing at all to the discussion? Quit reading the goddam thread if it bothers you. This person may or may not concern people here, but the issue is an interesting one. It has caused debate around the country.
MsHaiku, it is how the individual perceives having all of their bodily functions at the mercy of others. When I had Holden (emerg. C-section) I was at the nurse's mercy to take care of everything (won't gross anyone out) and even had to tell her when I passed gas... I was grateful that I was being taken care of.
We need to be aware of how we try to tell other people how to live. To say that the doctors should have their licenses removed and the parents jailed is simply not up to you. I respect your opinion, but let's have some compassion. You have no idea what this family is going through. I am sure they are being bombarded with many messages similar to yours, so don't worry, they will be aware of how much some people hate them.
And I don't feel right when you're gone away
Static Encephalopathy is present in persons diagnosed with Fetal Alcohol Syndrome (FAS) and Fetal Alcohol Effects (FAE). FAS and FAE are terms used to describe disabilities suffered by persons who were prenatally exposed to alcohol.
Personally, I believe parents should have the right to decide, with the input of qualified medical personal, all medical needs of their children, even radical procedures to save the life of their child.
My problem is the Ashley case, as presented, is when there is no medical emergency, did either the hospital or the parents have the right to alter the life cycle of this child in order to make it more comfortable for the parents provide long term care?
That's the question rolling around in my head too. And I don't have a viable answer.
But I do question their decision to start a very public and open to the world blog about their circumstance. I'm not sure who or what purpose that serves other than to open themselves up to a wealth of criticism, speculation, condemnation, sympathy and judgement from the masses.
On top of all else that they have to deal with.
...signed...the token black Pearl Jam fan.
FaceSpace
Here is what I have to add....which may not be much.
I feel the confort here IS regarding the parents....the child may not understand a growing body, but I don't imagine a "normal" sized body will be any more unconfortable for her, than a child's body. Maybe the parents feel more confortable taking care of someone who looks childlike in public, maybe it would be more convientant, or maybe the parents just want the child to look as she acts....I don't know, but the issue again...in each situation, is the parents.
Lastly, if we are to be in bodies that represent our age, then my husband would fit into a 12 year olds sometimes. AND....I guess we should just stop face lifts, botox, and what ever else. Because shouldn't an 80 year old look 80?
Agreed. On the whole, I'm torn about the issue. But as I said, the parents made one comment regarding the 'appropriateness' of her body fitting her 'mental age', and I really had to object to that.
The 'mental age' concept is an archaic one. People are people, simple as.
- the great Sir Leo Harrison
...the hormones took away any ability to know what height or weight the
child would have grown and at what rate, if any, just so the parents
could maintain their little "pillow angel".
--This child was given a full hysterectomy based on the presumption that she would develop as a "normal" female.
...the child was 9 this was an unnecessary surgery. They took away the
essence of female development based on the presumption that she may
have cramps. This could have been handled with medication, but they
were looking ahead to an additional cleanup responsibility. Another
level of the brain kicks in when females start mensturating, who
knows what sense may have been awaken.
--This child was given a mysectomy based on the presumption that she would develop as a "normal" female.
...the child was 9 this was an unnecessary surgery. Again, they took
away the essence of female development based on the premise that she
may develop breast cancer because there's history in the family. This
child's genetics was altered once she developed static encephalopathy,
therefore, it can not be clearly established that the child would have
developed breast cancer based on her herderity status.
The parents were afraid she would develop normal internally. It's sad and morally criminal to think that this was all done for comfort and appearance sake.
More to the point.. it will serve the parents with an easier, more convenient life.
We're talking mutilation here.... unnecessary surgery. Please... a hysterectomy so she doesn't have the trauma of starting her period.... she has the mental abilities of a 3 month old.. how is that going to traumatise her?
Also... where does one stop? A friend of mine is paralized from the waist down from birth.. something went drastically wrong during the birth. Would it have been acceptable to amputate his legs because they were of no use and it would have been easier for his carers to care for him because he wouldn't have been so tall or so heavy?????
Now don't get me wrong, I'm not decided on this issue either. It's got me umming and erring with the best of 'em.
But you're failing to take into account the intensely heightened discomfort that certain elements of normal female growth will cause a frail body that is entirely bed-ridden. A person with a mind which is fully developed - as in the case of your friend - has the mental capacity to deal with his relative discomfort; he is able to communicate that he is in pain to others, for example. However, the parents' concern is that their daughter's accute lack of awareness of the world around her, and her inability to communicate with others, are enough - without the added potential stress of heightened pains on top of all that. They want her to enjoy her world and what she can perceive of it.
The parents were very clear, if you had read their blog, in reiterating that this is nothing to do with their own convenience.
Like you, I cringed when I read that the parents wanted to 'keep their Pillow Angel a manageable size', but I'm willing to believe that this is just an unfortunate use of language and a good ol' American lack of tact, and not indicative of any sinister motives.
- the great Sir Leo Harrison
I did read their blog and of course they would say it has nothing to do with convenience. I've worked with people with advanced senility (just as bad as babies..) - in their home, or rather their carer's home, usually the children. Bedridden, their mind totally gone, incontinent, etc. Needed to be fed, cleaned, dressed, etc. They could do nothing on their own and couldn't express much. And yes, it was difficult to move these fully grown adults around, to get them in their wheelchairs/chairs, to anticipate their needs, but it can be done with the right help. OK not exactly like the little girl, but it goes to show that keeping someone "sweet and little to care for" by very extreme means is not necessary. There are other options out there, but obviously less convenient and most probably more expensive (though all this surgery must have cost an arm and a leg).