"Peter Pan" surgery stirs up controversy

[shesulsa]

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.

Link to full article

So where does eugenics start and end? Is this really a good thing? It does enable her family to care for her more easily, hence, remain part of the family which could be good, as opposed to having to spend funds on a homecare nurse who can lift her or placing her in a facility. And if she eventually does go into a facility, she will not become impregnated by the potentially unscrupulous orderly who needs release.

I don't know where I stand on this.

Thoughts?

 

[TonyMac]

Eugenics and those that believe in that are the most reprehensible evil people on the planet.

 

[Infinite]

Link to full article

So where does eugenics start and end? Is this really a good thing? It does enable her family to care for her more easily, hence, remain part of the family which could be good, as opposed to having to spend funds on a homecare nurse who can lift her or placing her in a facility. And if she eventually does go into a facility, she will not become impregnated by the potentially unscrupulous orderly who needs release.

I don't know where I stand on this.

Thoughts?

This is hard but I think in the end it comes down to quality of life. In this ONE very specific case if the details I have are accurate and there are no gotcha's I don't know (there probably are) I would agree with this.

She has brain damage meaning at least without some sort of miraculous medical marvel it is uncurable.

I'd rather have her with people that love her than people who are paid to make sure she is ok.

 

[tshadowchaser]

in the end it comes down to quality of life

agreed and as I do not know all of the story and cannot foresee the future I can not say if this was right or wrong. At this time I find it to be wrong in my hart and mind for I feel it was done more for the sake of the parents rather than the child. However in 10 years if I where to review the case or if it had not happened and I where to review the child’s history I might think it would be a wise decision

The changing of a human for "their betterment" is always a controversial topic

 

[Kacey]

While I understand - sort of - the rationale behind the parents decision, and possibly even the hormone therapy, I have severe difficulty understanding the doctors who would perform such radical surgery on a child that age - even one so severely disabled. The risks of such surgery are high, and I have difficulty condoning them as preventative for the reasons given by the parents; it is one thing, IMO, for an adult to choose prophyactic mastectomy or hysterectomy, but it is another for parents to choose such surgery for a child. I have known several students who were that severely disabled - or worse - who were mentally infants and physically mature; all of them wore diapers, and none demonstrated any visible signs of discomfort (or even awareness) during the physical changes of puberty or in the course of menstruation.

 

[shesulsa]

I have known several students who were that severely disabled - or worse - who were mentally infants and physically mature; all of them wore diapers, and none demonstrated any visible signs of discomfort (or even awareness) during the physical changes of puberty or in the course of menstruation.

Just a couple of questions, Kacey, were you in charge of their care? Did you actually care for menstruating, diapered females and pubescent diapered males?

 

[Kacey]

Just a couple of questions, Kacey, were you in charge of their care? Did you actually care for menstruating, diapered females and pubescent diapered males?

Yes, I did. I was a paraprofessional (teacher's aide) in a severe needs program. It was extremely difficult - and size (height and weight) was an issue, especially in moving in or out of a wheelchair, feeding, and diapering, which is why I can vaguely see the hormone therapy to keep the child smaller - but I never noticed any difference in behavior (signs of discomfort such as whimpering, touching the area, etc.) in any of the girls. The boys did occasionally experience physical arousal, but I saw nothing any different in the pubescent and post-pubescent boys than in the pre-pubescent boys.

 

[BlackCatBonz]

We can sit around and speculate all we want.......call them evil, reprehensible Dr. Moreau's.
These are real people facing real problems in coping with a severely disabled child's needs 24/7.
it's not a job.....it's their child. I'm sure the decision to do this came quite easily without any forethought to the societal impact of having people constantly condemn their choices.

 

[Infinite]

While I understand - sort of - the rationale behind the parents decision, and possibly even the hormone therapy, I have severe difficulty understanding the doctors who would perform such radical surgery on a child that age - even one so severely disabled. The risks of such surgery are high, and I have difficulty condoning them as preventative for the reasons given by the parents; it is one thing, IMO, for an adult to choose prophyactic mastectomy or hysterectomy, but it is another for parents to choose such surgery for a child. I have known several students who were that severely disabled - or worse - who were mentally infants and physically mature; all of them wore diapers, and none demonstrated any visible signs of discomfort (or even awareness) during the physical changes of puberty or in the course of menstruation.

I agree the doctors are a whole nother ball of wax. I can identify with the parents but the doctors I can not.

Hopefully there was some strong reasons medically to perform the procedure we do not see. I read in that article that another doctor agreed with the procedure for this specific case. So there may be medical benifits.

 

[Marginal]

From reading it, it seems more like removing the uterus etc was not to prevent sexual urges or really to prevent potential behavioral changes in puberty, it was to insure that the hormoe levels wouldn't change so that growth wouldn't be triggered later on.

That said, every time they decide hormone treatment's a good idea, it turns out to have horrible downsides. (Could be why they're removing breast tissue, to reduce risk of cancer developing etc) This procedure's likely to signifigantly shorten the lifespan of the folks on the receiving end.

OTOH, I can't see how this is eugenics. If the kids are so developmentally disabled that they'll never be able to give consent, there would be no cases of happy pregnancies.

 

[Andrew Green]

I think its easy for us to scream "Evil!" from the sidelines, but the truth is, we aren't the ones living with this child. We're not the ones that have that parent-child bond with her. We aren't faced with either providing 24 hour care for the rest of our lives, or turning our child over to a minimum wage paid worker.

My instinct is to say this is immoral and should not have been done, but, is it? If this is the way to provide the best care and best quality of life for the child maybe it was the right decission.

We do things medically to help people out all the time. We put drugs into them to control their mind, is controlling there body any different?

 

[rutherford]

A related question: "Where does privacy start and end?"

This is the second forum where I've seen this case being discussed. I have to wonder about how this family's painful decisions became a news story and hope that their quality of life is not negatively impacted by the opinions of others.

My heart goes out to them.

 

[Carol]

From what I understand, severely disabled people are healthier and have a longer lifespan when they are a place where they are loved, as opposed to a place where they are warehoused.

It also doesn't sound like a simple, or easy decision to make.

I'm......really not sure what is right or wrong here.

 

[Infinite]

From what I understand, severely disabled people are healthier and have a longer lifespan when they are a place where they are loved, as opposed to a place where they are warehoused.

It also doesn't sound like a simple, or easy decision to make.

I'm......really not sure what is right or wrong here.

May you never know.

 

[Carol]

:asian: :asian: :asian:

And you the same.

 

[shesulsa]

There are all kinds of logistics behind caring for someone like this that are too troublesome to list. To perform this surgery in this case might reduce her risks of having her body ravaged by yet more problems and increase the quality of life her family can have with her, lessen their expenses and keep the family united and healthy. And are doctors really wrong to weigh this in deciding upon whether to perform the surgery?

I understand the concern about others making choices for someone with no choice and this is a slippery slope.

So many questions this raises that we must examine as humans.

I think we have to walk this line precariously with no less discomfort than we are expressing here in order to maintain that cautious watch over those who may exploit.

 

[Rich Parsons]

I understand the concern about others making choices for someone with no choice and this is a slippery slope.

So many questions this raises that we must examine as humans.

I think we have to walk this line precariously with no less discomfort than we are expressing here in order to maintain that cautious watch over those who may exploit.

I was wondering about the slippery slope myself. I find the teaching or brain washing of a child with a religion to be absolutely abominal. Once they are older they have the capability of choosing and therefore skill set to choose a religion of they believe or want too. Yet, it is family. It is tradition. In some cultures in history children like this would not have survived long at all. And even those they might have survived still would have been removed as they most likely would be a burden on the group. Yet, in today's society and medical health, more can be done and is done.

As I do not know those involved and or walked a mile in their shoes, I have my opionions based upon me, and not them. And even then I am not sure where I stand on this situation. I know I do not condemn the family, I do not have enough information. I do not condemn the doctors, for they might be long time friends of the family and are only willing to help the family as they themselves might even be consdiered an Uncle/Aunt to the child. I do not know.

Back to the slippery slope though, if we tell the parents they cannot do this medical procedure to their child then could a group of people lobby for no shots to be given to children. Or no medical procedure to remove tonsils and such until the child is able to determine for their own that this is what they need and want. And for those that cannot decide be it a disability or lack of maturity, they just do not get the procedure and what happens is what happens.

Not sure or what I really think or who I feel on this, and agree that it raises a whole lot of questions.

 

[Brian R. VanCise]

This raises alot of questions. However in the end it does come down to the quality of life of this child/family in my opinion. Yet it is a fine,fine line that we are starting to tread.

 

[Kacey]

Back to the slippery slope though, if we tell the parents they cannot do this medical procedure to their child then could a group of people lobby for no shots to be given to children.

This already happens - several religious groups don't get their children immunized for religious reasons.

The key in this case, I think, is whether the risk of the procedures done outweigh the potential benefits. From this perspective, in this particular case, only the parents and the doctors can say how those balance. However, as a society, we need to discuss general guidelines for such issues; for example, if it is morally acceptable in this case to take the actions that the parents have taken, when else is it acceptable? Where do you draw the line? Do you consider physical disabilities separate from mental, and vice versa? Or only when both are present? What about the child who has such severe physical disability(ies) that cognitive testing is impossible? It is, indeed, a slippery slope...

 

[fireman00]

my wife works at an long term total care facility that takes care of brain/ nerve/ muscle damaged children and adults. We discussed this topic last night.

I was all against it - seemed to me that it was an ethical issue kind of like working DNA or gene manipulation to get the kid you want. she explained that a vast majority of the students at the facility are enrolled when the parents get older and can no longer physically take care of their disabled child due to the child's size and strength. She felt that if the parents had the surgery performed in order that they would be able to take care of the girl rather then have to put her in an institution then it was the right decision to make.

I'm still thinking that its a slippery slope.