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Posted

http://seattlepi.nwsource.com/local/6420AP...tml?source=mypi

 

 

Parents keep mentally disabled daughter child-size for easier care

 

THE ASSOCIATED PRESS

 

SEATTLE -- The parents of a mentally disabled girl have had a Seattle hospital give her treatments to keep her child-size so that she'll be easier to care for.

 

Nine-year-old named Ashley recently completed 2 1/2 years of treatments.

 

The treatments included a hysterectomy, the removal of her breast buds, and a course of estrogen.

 

KING-TV reports the treatment was approved by the ethics board at Children's Hospital. Dr. Benjamin Wilfond said the hospital agreed to the treatment to benefit the child.

 

She has a severe brain impairment called static encephalopathy. She can't walk or talk. She's fed through a tube and has the developmental ability of a baby.

 

Ashley's parents bring her to Children's Hospital every three months so that doctors can monitor her height, weight and estrogen levels.

 

 

She's 4-foot-4, weighs 70 pounds and doctors believe she is almost done growing. Without treatments doctors believe she would have grown to 5-foot-5, 125 pounds.

 

That would have made her too heavy for her caregivers -- her parents and grandmother -- to lift, move and bathe her.

Posted

they must really love her to do the female equivalent of chopping her balls off. Real ethical too, seattle... What would Rick Hoyt say?

 

http://www.wanttoknow.info/050917dadtrulycares

 

http://en.wikipedia.org/wiki/Team_Hoyt

 

For that matter, what would Jim and Hunter Kelly say?

 

I just hope that none of us are put in that type of situation where something like this would be a possibility, but if we are, to make the most of it instead of taking the easy way out, as these parents have done.

Posted

One could argue that "the easy way out" would have been to abort her or put her in a group home and forgotten about her. Letting her reach full-size, when her chances of leading a normal life are zero, would do more harm to her than good since she wouldn't be able to be properly cared-for. But I echo your last sentence.

Posted
Nine-year-old named Ashley recently completed 2 1/2 years of treatments.

 

If the parents are paying for this themselves, than I have no problem.

Posted
The treatments included a hysterectomy, the removal of her breast buds, and a course of estrogen.

i think i'm going to be sick

Posted

Wow...ethical no, but I can sympathize with the parents just the same.

 

I am, as an outsider to the health care field, very surprised that the hospital agreed with the treatment. I would have to guess that it was actually one doctor's suggestion that led to this. Your average parent (if I can think of myself as average) wouldn't come up with this course of treatment on their own.

 

The difficulty with a situation like this is what is the next step? Would an impared child be easier to handle if they were blinded? If she grew to 100 pounds instead of 80 would they consider amputating a limb or two to get her weight down? Extreme examples? Yes, but how far out of the realm of possibility are they?

Posted
Wow...ethical no, but I can sympathize with the parents just the same.

 

I am, as an outsider to the health care field, very surprised that the hospital agreed with the treatment. I would have to guess that it was actually one doctor's suggestion that led to this. Your average parent (if I can think of myself as average) wouldn't come up with this course of treatment on their own.

 

The difficulty with a situation like this is what is the next step? Would an impared child be easier to handle if they were blinded? If she grew to 100 pounds instead of 80 would they consider amputating a limb or two to get her weight down? Extreme examples? Yes, but how far out of the realm of possibility are they?

It was a committee that approved of doing these things. And no blinding a child doesn't help anyone, nor does amputating a limb. Keeping the weight down in this manner is the extent to which you'd go. And again, keeping her at a manageable size when she has no chance at a normal like makes it easier for her caregivers to properly feed, clothe, bathe, and control her.

Posted
It was a committee that approved of doing these things. And no blinding a child doesn't help anyone, nor does amputating a limb. Keeping the weight down in this manner is the extent to which you'd go. And again, keeping her at a manageable size when she has no chance at a normal like makes it easier for her caregivers to properly feed, clothe, bathe, and control her.

I know the treatment was approved by the ethics board. Are you saying that in itself makes it ethical?

 

Do you think that the parents came up with this course of treatment or that it is more likely that it was the idea of one of her doctors?

 

Keeping the weight down in this manner is the extent to which you'd go.
Says who? This time, this board approved this treatment. You and I have no idea where this may lead.

 

And no blinding a child doesn't help anyone

What if a doctor suggested that she would be more manageable/docile if she were less stimulated?

 

nor does amputating a limb

In the example I gave (which I said was extreme) I asked what would be done if her weight were not kept at a manageable level by her treatment. Might someone consider amputation to reduce her weight? How different would that be from a hysterectomy & the removal of her breast buds?

 

You use the word manageable in your reply. Doesn't that take the humanity away from the child? We want to keep her at a manageable size. Does that word bother you even a little? Sounds like something a zookeeper might say.

 

 

I'm not picking, so please don't take it that way. This is a very sensitive subject, and again, I'm asking extreme questions and using extreme examples on purpose.

Posted

The ethical thing would have been to remove the feeding tube long ago. If there is no hope for recovery or being a member of society, what is the point?

 

That said, it is the parents decision, at least until they die. Like KD said, I hope they are paying for it.

Posted

I make it a point to stay away from pediatric care as much as possible (I'm more than happy to initiate CPR on your kid, but I want nothing to do with his health care! lol), but I can't help but think this approach is WAY too radical. I am a supervisor in a long term care facility and we deal with issues of immobile patients every day. If it were ME, I would never have even THOUGHT about altering my daughter's physiology in order to keep her from growing to a size of 5'5", 125lbs. Instead of spending all this money on hacking up the kid, they could have spent a fraction of it on lifting and transferring equipment and some instruction how to properly care for an individual who is totally dependent on others.

 

I know that may sound like an oversimplification, but the fact of the matter is that many hospitals and medical facilities are becoming "no-lift" these days. I supervise nurses and nursing assistants who are little ladies in their 50s, and they can quite easily bathe, transfer, and care for 250lb male patients. If the difference between 4'4" 70lbs and 5'5" 125lbs is all that significant to this family, then they have yet to be educated on how to provide care for such a patient.

 

I don't really want to debate the ethics of this situation, but the more important factor here is liability. The two go hand-in-hand, obviously, but clearly with the family so gung-ho about this strategy there is little or no liability on the part of the hospital.

Posted
I make it a point to stay away from pediatric care as much as possible (I'm more than happy to initiate CPR on your kid, but I want nothing to do with his health care! lol), but I can't help but think this approach is WAY too radical. I am a supervisor in a long term care facility and we deal with issues of immobile patients every day. If it were ME, I would never have even THOUGHT about altering my daughter's physiology in order to keep her from growing to a size of 5'5", 125lbs. Instead of spending all this money on hacking up the kid, they could have spent a fraction of it on lifting and transferring equipment and some instruction how to properly care for an individual who is totally dependent on others.

 

I know that may sound like an oversimplification, but the fact of the matter is that many hospitals and medical facilities are becoming "no-lift" these days. I supervise nurses and nursing assistants who are little ladies in their 50s, and they can quite easily bathe, transfer, and care for 250lb male patients. If the difference between 4'4" 70lbs and 5'5" 125lbs is all that significant to this family, then they have yet to be educated on how to provide care for such a patient.

 

I don't really want to debate the ethics of this situation, but the more important factor here is liability. The two go hand-in-hand, obviously, but clearly with the family so gung-ho about this strategy there is little or no liability on the part of the hospital.

 

 

Nice post. :rolleyes:

Posted
Nice post. :rolleyes:

I never would have considered the fact that the family could have modifed their home a bit and added equipment to assist in moving the girl (probably at the insurance companies expense) and that would have been that. Their solution was to me extreme.

 

Guess we need to keep the focker around a bit longer since he was value added today.

Posted
Yep, he can be pretty useful at times. :blink:

 

Just once I would like you to be able to appreciate AJ for who he is and not your personal boy toy :blink:

Posted
I make it a point to stay away from pediatric care as much as possible (I'm more than happy to initiate CPR on your kid, but I want nothing to do with his health care! lol), but I can't help but think this approach is WAY too radical. I am a supervisor in a long term care facility and we deal with issues of immobile patients every day. If it were ME, I would never have even THOUGHT about altering my daughter's physiology in order to keep her from growing to a size of 5'5", 125lbs. Instead of spending all this money on hacking up the kid, they could have spent a fraction of it on lifting and transferring equipment and some instruction how to properly care for an individual who is totally dependent on others.

 

I know that may sound like an oversimplification, but the fact of the matter is that many hospitals and medical facilities are becoming "no-lift" these days. I supervise nurses and nursing assistants who are little ladies in their 50s, and they can quite easily bathe, transfer, and care for 250lb male patients. If the difference between 4'4" 70lbs and 5'5" 125lbs is all that significant to this family, then they have yet to be educated on how to provide care for such a patient.

 

I don't really want to debate the ethics of this situation, but the more important factor here is liability. The two go hand-in-hand, obviously, but clearly with the family so gung-ho about this strategy there is little or no liability on the part of the hospital.

 

On a serious note, very nice post my friend!

Posted
Just once I would like you to be able to appreciate AJ for who he is and not your personal boy toy :blink:

Oh, I do....

 

 

 

 

 

 

...sometimes. :blink::blink:

Posted

BB: I don't know who proposed it. It could just as easily have been her parents asking if there were a way to keep her a more manageable size and the doctor giving suggestions that would need to be run by an ethics board. As to whether the things done to her were ethical just because an ethics board approved them, that's a philosophical question and on the order of whether the girl is being harmed by this (i.e. we'll never know).

 

Suffice it to say that it's unfortunate no matter what you believe.

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