Surgery to Stunt Girl's Growth Sparks Debate

[The Dog]

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.

Ashley's parents say keeping her small will reduce the risk of bedsores. Preventing her from going through puberty also means she won't experience the discomfort of periods, they say.

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

[wink]

I was reading about this just yesterday, I personally find nothing wrong with what the parents are doing or have done.


This is taken from the parents blog, from the comments section

?Having an 18 year old mentally handicapped daughter who weighs 220 lbs is no picnic.  Getting her in the bath and out again is hard work and some skillful wrestling moves.  She is able to walk unsteadily, so thankfully I have that, but please don't judge until you've tried wrestling a 220 lb scared child out of the tub by yourself after she has fallen and hoping the soothing words: 'It's ok, mommy's here, everything is going to be fine' outlasts your back.  The black and white / right vs. wrong / ethical vs. unethical line seems so clear for you, but come play at my house for a week ....?

[Guns N RockMusic]

As one Doctor put it, if moral concerns are raised based on the girl's dignity, be reminded that she lacks the mental capacity to know or experience dignity.

[GeorgeSteele]

As one Doctor put it, if moral concerns are raised based on the girl's dignity, be reminded that she lacks the mental capacity to know or experience dignity.

Thanks for the reminder. ?In case you're interested, I've got a few dead bodies you can toy around with, they know nothing of dignity either.

[The Dog]

I tend to agree with most of you, but I don't know, something about this really disburbs me.  It seems to be more about the comfort of the parents then it does the comfort of the kid.  I think this sets a dangerous precedent for parents of children with disabilities.  At what point do we stop trying to make our lives "easier" and just live with what life has given us.

its an interesting case.

[Guns N RockMusic]

The way I understand it, this is a quality of life issue for all parties concerned.  I commend her parents for even seeing the pregnancy through, as I think most people would not. 

[The Dog]

The way I understand it, this is a quality of life issue for all parties concerned.? I commend her parents for even seeing the pregnancy through, as I think most people would not.?

From what I remember, I don't think they knew anything was wrong till afterwards....

[Axl4Prez2004]

Boy oh boy, I knew this story would make it into the Jungle!  Tough one.  I agree with the person who talked about how lucky this girl is to have a family that has so much love for her.  That's beautiful.  This girl isn't being deprived of anything!  In fact, thanks to the procedures, she is going to get even more extra special T.L.C. 

To Sterling's point...maybe gunsnrockmusic is anti-abortion?  It sounds like they didn't know before the birth.  What a terrible situation.  This family however took the lemons they were given, and made sweet lemonade.  Good for them.    

Honestly, I don't know how I'd react if put in their shoes.  I'd probably do the same thing.  We've got 2 kids and we believe in equality, so I'd want to give each kid 150%. 

[MCT]

The way I understand it, this is a quality of life issue for all parties concerned. I commend her parents for even seeing the pregnancy through, as I think most people would not.

But, why would you consider continuing a pregnancy where the child was going to be severly disabled to be commendable?

To Sterling's point...maybe gunsnrockmusic is anti-abortion?

Of course he is! But Sterling knows this. Her question was simply a way of creating an opportunity to express her own point of view on the issue of abortion. Thus paving the way for her no doubt devious designs.

You shouldn't bait him like that, Sterling. It's cheap, tactless.

Besides, Guns N CockMusic has more goin' on than just a simple anti-abortion stance. And he should be taken with more than just a grain of salt. Anything less is insulting.

[Guns N RockMusic]

The way I understand it, this is a quality of life issue for all parties concerned. I commend her parents for even seeing the pregnancy through, as I think most people would not.

But, why would you consider continuing a pregnancy where the child was going to be severly disabled to be commendable?

To Sterling's point...maybe gunsnrockmusic is anti-abortion?

Of course he is! But Sterling knows this. Her question was simply a way of creating an opportunity to express her own point of view on the issue of abortion. Thus paving the way for her no doubt devious designs.

You shouldn't bait him like that, Sterling. It's cheap, tactless.

Besides, Guns N CockMusic has more goin' on than just a simple anti-abortion stance. And he should be taken with more than just a grain of salt. Anything less is insulting.

No, I'm very much pro-choice.? I don't like the idea of abortion, but I know I'm not strong enough to raise a mentally challenged child.? In my opinion, sometimes no life is better than life.? To be honest, I don't know what I would do if my child was born handicapped to this degree without any warning.? I said it was commendable of these people because they stuck together and have given this child everything they could - including their love.? I'd like to think I could do the same, but I'm not sure I could and think most people would struggle with it as well.  In the case someone would know their child would be retarded, I would not agree with their decision to bring it into the world. but I would respect them for sticking to their pro-life stance and not viewing their situation as "different."

[Axl4Prez2004]

No, I'm very much pro-choice.? I don't like the idea of abortion, but I know I'm not strong enough to raise a mentally challenged child.? In my opinion, sometimes no life is better than life.? To be honest, I don't know what I would do if my child was born handicapped to this degree without any warning.? I said it was commendable of these people because they stuck together and have given this child everything they could - including their love.? I'd like to think I could do the same, but I'm not sure I could and think most people would struggle with it as well.? In the case someone would know their child would be retarded, I would not agree with their decision to bring it into the world. but I would respect them for sticking to their pro-life stance and not viewing their situation as "different."

Have I said lately that I very much respect posts like this???  Guns N' RockMusic, rock on! 
 

[MCT]

Ok, so you're pro-choice. I admit I jumped the gun. Pun intended.

But I was right, you had more goin' on there.

I very much agree with your opinions. Except for the definitive "I would not bring a retarded child into this world" statement. Me, I'm not sure that given the choice, I'd be able to abort. I'd like to think that I could if the child's life was going to be fraught with physical pain. But the mere thought of aborting a pregnancy simply because of a child's projected mental state definitely makes me a little squeamish.

Admittedly, that opens up other areas of debate, sure. But I state it as a personal opinion. Nothing more.

And of course the old "who or what gives you the right to determine the value of life...to play God?, etc" is certainly applicable here. But while I may be more hesitant than you to come out and say that sometimes no life is better than life, and while I might tend to look at foundational morality a little more closely, I'm sure we'd both look at society at large, at the realistic truths of humanity as masters of our own destiny, and at the inescapable fact that we're still here and functioning after all these centuries, as a means to answer that question.

Too often we get bogged down in moral mud. Not to say we shouldn't question and explore, no. But maybe we should have a little more faith in humanity. Like I said, we're still here.

For example, the doomsayers among us look at the abortion issue as a strictly moral one, whereas the focus should be on women's rights.

Did any of that make sense? My head feels fuzzy...

[Guns N RockMusic]

I don't look at it as a woman's rights issue.  Privacy issue yes, but not woman's rights.  If I were to conceive a child with a woman, I believe that I should have legal, equal say in what happens with that child.  Meaning that if I want to have it and she doesn't, we should be able to goto court.  Of course, I would assume all legal responsibility for the child.  Conversely, if I don't want the child and she does, she should accept legal responsibility - although I'm more lenient on this premis. 

As it stands right now, the man has no legal input on the child until it is born and I disagree with that.  If a woman choses to have a child without mutual consent, the man is required to oblige her choice.  If it's all about the woman since it's inside of her for 9 months, then you can't make the man 50% responsible once it is out.  Either the man is 50% responsible always or he's not legally obligated at all.  You can't have your cake and eat it too.

[Axl4Prez2004]

I don't look at it as a woman's rights issue.? Privacy issue yes, but not woman's rights.? If I were to conceive a child with a woman, I believe that I should have legal, equal say in what happens with that child.? Meaning that if I want to have it and she doesn't, we should be able to goto court.? Of course, I would assume all legal responsibility for the child.? Conversely, if I don't want the child and she does, she should accept legal responsibility - although I'm more lenient on this premis.?

As it stands right now, the man has no legal input on the child until it is born and I disagree with that.? If a woman choses to have a child without mutual consent, the man is required to oblige her choice.? If it's all about the woman since it's inside of her for 9 months, then you can't make the man 50% responsible once it is out.? Either the man is 50% responsible always or he's not legally obligated at all.? You can't have your cake and eat it too.

interesting thoughts.  i on the other hand have always felt a child should be brought into the world only when both parents are 100% for the introduction of the child into this world.  Call it a "simultaneous turning of the keys" like in the movies when they are launching nuclear missiles.  I think it's that important.  If 50% of the two-some is not all for this child being brought into the world, I'm sorry, that kid will be, in the words of Axl in Bad Apples, "...all fucked up." 

[MCT]

I don't look at it as a woman's rights issue. Privacy issue yes, but not woman's rights. If I were to conceive a child with a woman, I believe that I should have legal, equal say in what happens with that child. Meaning that if I want to have it and she doesn't, we should be able to goto court. Of course, I would assume all legal responsibility for the child. Conversely, if I don't want the child and she does, she should accept legal responsibility - although I'm more lenient on this premis.

As it stands right now, the man has no legal input on the child until it is born and I disagree with that. If a woman choses to have a child without mutual consent, the man is required to oblige her choice. If it's all about the woman since it's inside of her for 9 months, then you can't make the man 50% responsible once it is out. Either the man is 50% responsible always or he's not legally obligated at all. You can't have your cake and eat it too.

Being a penis wielder, I sympathize. But the pneuma of the abortion issue is still women's rights. And no construct of flawed logic or rudimentary sense of injustice towards men is a good enough reason to try and take that away from them.

Anyway, I see your point. But there is an obvious problem in it as you're taking responsibility away from the man and pinning it all down on the woman in the name of fairness.

Basically, you want to have 50% ownership over a woman's body for the nine months that she's pregnant. Either that or you have no legal responsibility whatsoever for the consequences of an action that you, as a presumably competent member of the citizenry, consented to.

Tell me, are there any other regressive social policies that you'd like to adopt? Any other responsibilities you'd like to shun?

You know, this sort of blue collar/everyday dad getting the shitty end of the stick routine is fine on its own, I guess. But when you hide behind those proletarian ideals and shit out offhanded radicalism in the name of an otherwise worthy cause, how can you expect to be taken seriously?

Don't get me wrong now, you have some good points. But overall, your thoughts lead only to one place and to one inescapable conclusion. Sorry.

[Jessica]

If women couldn't abort anymore, they would do whatthey always did :

Throw themselves down some stairs a few times until the foetus dies.

Men have no right on when a woman is mentally ready to welcome a life within her.
If she isn't, forcing her to because the dad wants to is like forcing her to have an alien inside her and often, the child dies before term in these cases.

Back to topic.

[Natasha23]

As one Doctor put it, if moral concerns are raised based on the girl's dignity, be reminded that she lacks the mental capacity to know or experience dignity.

I understand your argument, but using that logic, if what if this girl was raped?  Because she lacks the mental capacity to know or experience dignity, wouldn't it still be wrong if she was violated, even if she lacked the understanding of what was happening to her body?

Back to the situation at hand, it just seems so perverse and wrong to me.  There are many people out who have to take care of disabled adults, and they get through it because they have to.  I just think that the parents' primary concern was making it easier for them to take care of their daughter.  Their daughter's comfort MAY have been a factor, but I don't believe it was the main factor.