An Example of Eugenics or not?

[Ther]

I recently came across this story on Yahoo and was wondering what all of you thought about it:

CHICAGO - 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, and has been decried over the Internet as perverse and akin to eugenics.

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.

You can read the rest of the story by clicking this link: http://news.bostonherald.com/national/view.bg?articleid=175346

So do you feel the parents of the child have a right to do this or not? Is this "eugenics" or is it something different?

[Zook Murnig]

Legally, yes, a patient, and the patient's legal guardian, has the right to request whatever treatment or procedure they want, but the caregiver is not obligated to follow through with anything except a refusal of care. In this case, the doctor(s) should have refused such a procedure, but, in the end, if you look hard enough, you can find a surgeon willing to do anything for a quick buck and a name in the papers. They know that, despite all the shit they'll catch for doing it, they will get more patients because their names are out there in people's heads. Unless it becomes illegal or sanctions are put into place on such a procedure, their business will continue.

Now, ethically, that's a tough question, much like any ethics question. Part of the ordeal is, would the child have known the difference? It is stated that the child was mentally and physically disabled. Therefore, if physical growth were halted at a point approximately equal to their mental potential, then it could be viewed, by some, as a kindness, avoiding the awkward questions of "why can't you do this" from those ignorant of their mental condition. People don't expect much from children, or from people who look like children.

In closing, believe me when I say that the above are not my opinions, but merely legal and ethical thoughts. I find this particular incident to be reprehensible and horrifying, but they, I am sure, had their reasons, however twisted.

[Sighter Tnailog]

I'd have to know more on the exact specifics of the physical and mental handicaps before making up my mind.

[hamnat]

I have to say although I am disgusted by it, I have concluded their decision to be entirely logical. As their blog stated, the removal of her breasts, appendix, and uterus allay any future complications involving those organs, including discomfort, infection, and possible cancerous growth.

Also, the fact that she would be effectively sterilized is not much of a problem because she would have been unable to reproduce without being effectively raped. The decision made by the parents was run through an ethics council before the "Ashley Treatment" was begun. They concluded that the treatment would be in the best interests for the girl and would make her life easier, for both her and her parents.

As much as this horrified me, mostly because of the sterilization, I find it a very logical course of action.

[Sir Fedlund Overby]

Great post Santhala, this is a very interesting question, one that is very close to me.

I work with mentally and physically disabled full time in a high school. What these parents did does not strike me as horrible at all, in fact, it seems to me to be a merciful and wise course of action. From my experience, the parents are right when they say that this treatment will allow the parents to more effectively care for the child at home. There is a BIG BIG BIG difference between dealing with a 4'5 child and a 5'6 child, both because of the height and the accompnaying weight difference.

When working with physically disabled, the ability of a caretaker to care for a disabled individual is closely linked to the caretakers ability to move and manipulate the physical body of the patient. I am 6'4 and a pretty good athlete, but performing wheelchair transfers, changing diapers, and positioning my students can be very difficult when I have to do all the work of moving, turning, and lifting a kid. When I have to struggle to transfer a student from a bed to a wheelchair, it is hard on me (everyone in my department has a sore back at some point or another) and it can be very uncomfortable for the students that have to rely on me to manhandle, push, prod, and place them in their chair.

Now, consider a middle aged woman who does not have an athletic build trying to do the same thing day after day, week after week, year after year for the life of her child. Consider when she is 60 or 70 years old and that child is still in her care.

The benefits of stunting the growth of the child are many, including:

1. Allows the parents to be responsible for more of the caretaking, rather than relying on paid professionals to come in to administer care.
2. A lighter child will experience less discomfort and a reduced chance of serious injury when being transfered and undergoing other types of care.
3. The physical wear and tear on the parents will be reduced, which is a BIG deal. Remember, the parents will physically have to move this child many times over the course of one day.

There are obviously a lot of details to consider before I would ever give my full approval to this course of action. But, on the face of it, I would say that the benefits of stunting the child growth outweigh the harms.

[Empyrean]

Logical though it may, and as many benefits as there appear to be, I'm not entirely sure I would approve that sort of thing. Mostly because this is a topic that hits close to home for me. One of my older brothers is mentally and physically handicapped.

I could say that if the main purpose of the procedure were to relieve some of the physical pain on the child, then I might say yes. I don't think a procedure should be done just to save the parents some trouble (although in this case, that's not the only reason, so I guess I don't have as much of a problem with it). Also, just because, yes, the child may not be aware of what is being done or what is hard on his or her parents, that doesn't mean you can do whatever you want to them. I'm not saying this particular procedure is that harmful. I'm saying that a person's limited awareness is not a reason to do anything to them.

Taking care of a person with mental and physical handicaps can be emotionally and financially draining sometimes. So it's entirely understandable that the parents would want to spare their child some discomfort, and themselves, as well. But I don't think stunting their growth is the answer. I know that in the case of a handicapped child, the parents have to make a lot of decisions that the child is not mentally able to, but I also firmly believe that the child should always be given an option, even if they do not fully understand it. At least so you can try to help them understand what's going on a little.

I don't know. All in all it sounds logical enough, but the idea that you're taking away part of someone's growth just to alleviate a lot of discomfort still bothers me.

[galadra]

If she's still in an infant state, she's probably not going to be growing mentally quickly to a "normal" (or even passable as "normal") mental-body&image ratio. it's the parent's child, and if this is going to allow them to care for their child easier, then power to them. who are we to say that they cannot do this? they weren't doing this to harm their child, their "pillow angel." it seems to me that the child herself might not even care and/or notice the lack of growth.

[hamnat]

For those of you that are having difficulties understanding some people's horror, then picture yourself as you are now, only completly sterile, shorter, and without breasts. Note this only works if you are a woman, and will have more various effects in adolescents.

All in all, it is logical what they are doing, but even when my brother read the story, he really took pity on the girl. Not because she is disabled, but because she will never be able to have children. He also found the idea of completely removing a woman's breasts to be very unusual. He kept going on about that subject for several hours, and nearly made my mother have indisgestion at dinner.

[Skie and Avery]

I only read as far as Sir Fedlund Overby, and I have to say that I agree with them one hundred percent. I used to work in a nursing home, and did home health care on the side. If the parents keep her small, they don't have to put her in a home. While many nursing homes and assisted living centers are good places, there are bad eggs in every profession. How horrible would it be to have to place her somewhere where she wasn't properly taken care of. I've trained nursing aides at the home who confessed to me that they wished they could skip the rooms with patients like this girl would be because it is very difficult to move and change a full grown bedridden adult.

Also, in women like her, who will never be mentally capable of having a relationship, I think that prudently removing the ovaries is the best way to go. I've had a patient get pregnant before, and she was little more mentally than a three year old. It happens all the time in comotose women, as well. It's a sick world we live in and the longer that these parents can keep her away from the nursing home and be able to care for her and take her on the little family outings that she will be able to enjoy in her limited way, the better.

Hamnat, without breasts, she'll never contract breast cancer, which is often never tested for in people with disabilities. I know of a couple of really great doctors in the OKC area who have never had this problem, but then I know of about five times more who don't think it's "necessary." Just because a woman isn't active, it doesn't mean that cancer won't develop.

Also, to add to Sir Fedlund's list, a lighter person won't develop bedsores as easily, which can be catastrophic. If you don't think that bedsores are as bad as they sound, go take a knife to your butt, pee in your underwear, and then sit in a chair for a couple of hours and see what that does to you. In the home, we were always trying to combat these things and prevent them by moving patients from side to side but when a person is confined to bed all the time, sometimes it's inevitable, and of course there's always that lazy aide on every shft who won't do the freaking work, which is another rant of mine in itself.

I've heard alot of people on the radio and in truck stops talking about the whole "what if there's a miracle? She's ruined." aspect of the story. I took care of a nineteen year old girl once who had been completely paralyzed and in a coma for so long that her brain started to deteriorate. While she was at our home, we worked with her in a rehab setting and it got to the point where she could walk with a specialized walker, talk to us in sign language, and feed herself with special utensils. While it was an amazing miracle, she never progressed beyond the point of a seven year old, mentally. I really don't see any problems that this treatment is going to pose to the girl in question further down the line, and I can honestly say that if the nineteen year old girl had been lighter, we could have made more strides with her as far as regaining her ability to walk and dress herself.