Children with disabilities

[Rapscallion]

http://www.theage.com.au/news/world/...777152889.html

Have they helped or harmed the child?

Rapscallion

[AFPheonix]

Hmmm....will take some pondering on this one, because I can see both sides, really.

But then, the butthead in me asks why not just install a suitcase handle in her spine for even more ease in portability?

[Banrion]

** Copied from the closed CS thread***

This may sound horrible to some of you, but my first reaction was "What harm has it done?"

This procedure will allow Ashley to stay in her family's care, instead of being institutionalized. I know from experience that it is next to impossible to take care of a full grown severly disabled adult at home, unless you just leave them in bed all day. Taking them out of the house is even more problematic. 150 lbs of dead weight is no easy task to move with arms flying one way and legs the other. Many people feel that there is not enough care and attention given individually in a nursing home setting.

She is disabled to a point that she likely would not be able to have children even if she found a mate later in life, which is unlikely due to the severe mental impairment. Also dormant reproductive organs are more likely to develop cancers. There is also the concern that she was entering puberty at 6 years old. Something was causing some serious issues with her horomones, and for females that usually stems from the uterus and ovaries.

I think that her parents are acting in her best interests, to keep her with her family, and to keep her in a condition that is conducive to her participating in family events instead in bedridden and secluded from the world.

[Luna]

Wow. When I first saw this I thought: WTF???!!

But then I read the last part:
"They also wrote: "The objection that this treatment interferes with nature is one of the most ridiculous objections of all; medicine is all about interfering with nature. Why not let cancer grow and nature takes its course. Why give antibiotics for infections?"

That made me think. They did it so they could care for her for the rest of their lives so she didn't have to be sent away to an institution. I still feel weird about that. It just seems wrong, but done for good reasons.

I'm truly torn on this.

[DGoddess]

I have to admit, I'm somewhat on the fence on this one:

On one hand, I can see where it would be cruel and unusual to interevene with nature by removing reproductive organs/mammary glands/et al. In that sense, it can be easily viewed as mutilation.

On the othe hand, this young girl has the mental capacity of a 3 month old infant. While she'll have some quality of life, it's limited. She won't be able to talk or walk, but at the same time she won't be able to reproduce or go through puberty.

Which I simply cannot imagine having to take care of someone who is the size of an adult and not only have to change diapers, but also maxi pads one week out of the month. The child won't understand about such things, so really it may be for the best in the long run for the family, as well as the child, to have all of this done.

The parents have the backing of the hopsital and their doctors, so really there's not much legally that can be done. The parents have the legal right to decide what's best in the medical sense and they have doctors who support their right.

It's a damned if you do, damned if you don't situation.

[rahmota]

Well what I'm about to write amy seem rather harsh, cold or unsympathetic but it is how I feel. I do not claim to understand the parent's emotions but I recognize that they made an incredibly difficult and painful decision in an utterly unwinnable unpleasant situation. damned if you do damned if you dont like Dgoddess said.

My take on this though is that they did the best thign they could for themselves and their daughter so that they could take care of her and let her continue living and being with them. This person is severely handicapped and even as little as 50 years ago would have been shoved into an institution to be left to die alone and neglected at best or abused and taken advantage of at worst. a hundred years ago she probably would ahve been outright killed in many places. At least now she will live out her lifespan with her family. In their care. Which for want of knowledege against them is probably better than an instituion of somesort.

[Lace Neil Singer]

Just playing devil's advocate here, but I have to wonder how the child got in that condition. I've read things on 22 week old preemies being kept alive only to end up severely disabled, like this girl in fact. So maybe if they'd just let their 22 weeker die in the first place, this could have been avoided. After all, this is hardly any life at all for a person.

As for "now she's here", well probably best to do what they can to keep her at home. She won't know what's going on regardless, but it'll soothe the parents' pricking consiences.

[rahmota]

Well true how she got here is not clear so we dont know if it could have been prevented. BUt then again maybe her parents where not of the religion/belief system to have allowed that. We dont know. And you are right it may not be easy but sometimes it is for the best. Sometimes I think medical technology has advanced too fast in many ways for the ethics/beliefs/mindsets to develop ways of handling it. Now we can "save" the life of every preemie. But to what sort of life?

But yeah she is here and the parents are doing the best they can to take care of her so, regardless of what came before and why they are taking responsibility which is better than many parents with "nominal" children do.

[TheRoo]

My 7 year old son has a mild case of static encephalopathy. He can walk, and can say as many words as most 2 year olds. He does understand pretty much everything when people talk to him. As far as a diagnosis goes, nothing with him seemed out of the ordinary until he didn't reach the usual milestones at normal ages (i.e. he didn't walk until he was almost three). I would never consider something like this for him, because his situation doesn't warrant anything like that, but because there is a lot more to this situation that we don't know, I can not pass judgement about the actions of the parents.

[Banrion]

http://www.time.com/time/nation/arti...0.html?cnn=yes

Time Magazine is doing a series on this child as well. This article confirmed my previous suspicions that it was done as a preventative measure, not just convenience. There is a family history of cancers and fibrocystic disease.

[Myra]

I've been reserving judgement on this issue, and am in the process of reading the Time article, but I wanted to voice one problem I had.

The parents made this statement that was quoted in the original article:

"The objection that this treatment interferes with nature is one of the most ridiculous objections of all; medicine is all about interfering with nature. Why not let cancer grow and nature takes its course. Why give antibiotics for infections?"

At first I thought "They did this to their daughter for their own convinience, how dare they compare that to CANCER?" Even now though, if it is prevenative, I still am irked by this statement. Their daughter has had no cancer yet, and I recently found out a good friend of mine is ill and may not make the year due to lung cancer. The comparison just bothered me is all. The little girl isn't dying, but my friend very well might be. I don't see the correlation at all. But that is one lady's opinion, and I may just be pregnant and moody, and it just might be a raw subject given that I just found out about my friend. Just wanted to share my thought is all.

[Banrion]

At first I thought "They did this to their daughter for their own convinience, how dare they compare that to CANCER?" Even now though, if it is prevenative, I still am irked by this statement. Their daughter has had no cancer yet

But then why are these parents being villified, while women who are going out and having double mastectomies to prevent breast cancer being touted as heroes? This child will NEVER be able to make a decision for herself, it is the parents duty to make the best decisons they can for this girl's entire life.

[Myra]

But then why are these parents being villified, while women who are going out and having double mastectomies to prevent breast cancer being touted as heroes? This child will NEVER be able to make a decision for herself, it is the parents duty to make the best decisons they can for this girl's entire life.

I can understand that, but my beef was that they compared what they did to cancer treatments. To me, prevenative measures are not comparable at all. When you are seeking treatment for cancer, it's because you are RIGHT THEN ill and trying to avoid dying. With prevenative measures, you just want to make sure you're not in that position later in life. As I said, this situation is raw to me since a good friend of mine is battling lung cancer.

Reason why I didn't comment on the situation as a whole is I really haven't formed an opinion on it. Something about it doesn't sit right, but every time I sit down and think about it, I can understand their position and I don't think negatively about them. Right now, I cannot put my finger on what bothers me about it, so I'm reserving judgement until such a time comes.

[rdp78]

I read the same story on MSN a few days ago and it's similar to the Time story. Anyway I can see why it's wrong to prevent this child from growing but then again she isn't mentally grown and so maybe it is best for her to stop growing so it is easier to take care of her. I have to say this really has to be hard on the parents to do it and they are trying to figure out what is best for their child.

[DesignFox]

I have seen children with this disability and it is the most horrible thing I have ever witnessed. I think the parents have done the right thing. Their daughter will never have a mind of her own, never be able to make a decision, or do ANYTHING for herself, EVER. Really take a minute to think about what that means.

By removing her sex organs, many many complications and discomforts have immediately been removed. By keeping her size tiny...at least she can stay home with her parents- they can travel with her...get her OUT of the house. She will not have to be confined to a bed with a tv or wall for company. She will not have to be thrown into a cold institution because she is too heavy and cumbersome to deal with. She will remain home where the likelihood of abuse is most unlikely.

Her parents can cuddle her, hug her, and reassure her- just like you would do for a 3 month old infant- which is where this child's mind will be permanently.

By doing what they have done, the parents of course have made their own lives easier...But ultimately, their little girl's quality of life was improved ten fold. I can't find fault in what they've done.