Should Severely Disabled Children Be Kept Small?

A report from a medical journal has explained how and why two doctors have given high doses of estrogen to a 6 year old girl who has a severe "neurological and cognitive impairment" in order to stunt her growth so that her parents will be able to continue to care for her as she gets older. The parents consented to this knowing that as their daughter gets older she will be harder and harder for them to take care of as she matures and gains weight and size. Their daughter will never be able to bathe, dress, or feed herself, they wish to care for her as long as they can. They felt that stopping her growth, and keeping it manageable for them to lift her and take care of her will allow them to take care of her later in her life instead of having to rely on care givers later in her life.



This one is sure to spark some debates in the medical field. The article does state the treatment was reviewed by an ethics committee, but I'm sure there will be HUGE debates over this procedure and decision to do this.

This was requested by the parents with nothing but love for their daughter in mind and future plans as to how they can take care of her themselves for as long as they possibly can.

Besides the ethical questions involved with this, I wonder how much study has gone into testing this treatment, stopping a child's growth at 7 years old. Do they actually know that all this treatment will do is stop her growth and that there are no other side effects? What a radical answer as a treatment. Is this right? Should this be allowed to go on? Is this a brilliant idea, or a selfish answer (the parents) to a "problem"?

[edit on 1/11/06 by Keyhole]

I am saddened by this and in two minds.

I think if it makes it easier for the parents to give her good care then ultimately this is of benefit to make al thier lives a little more bearable.

But who has the right to play God ? Shouldn't nature be let to run it's course and she be able to live out her life naturally.

Then there is the issue of the drugs and further damage this may have casued.

On a par with stem cell research I think.


In Pace Always
resi

In my opinion this is one of those cases where such a thing is acceptable. The reasons for it are quite clear, and it was with the parent's consent. I'm pretty sure that the parents did this out of care for their child. The only problem I see with this is the potential for other parents to abuse this sort of treatment out of laziness and not wanting to deal with a full grown teenager.

Either way I think that this could use a lot more research, and a lot more research needs to go into preventing these diseases in the first place. I realize that it's idealistic to think we can prevent everything, but I say we should at least try our best and do what we can as mankind as a whole.

Originally posted by cyberdude78
Either way I think that this could use a lot more research, and a lot more research needs to go into preventing these diseases in the first place. I realize that it's idealistic to think we can prevent everything, but I say we should at least try our best and do what we can as mankind as a whole.

I agree. Research is a better answer than this.

Imagine if this became the normal treatment for every child born with this sort of brain damage, just being given this treatment as a way for society to help take care of them alot easier.

When you look at it like that, that's just wrong.

Originally posted by resistancia
I am saddened by this and in two minds.

I think if it makes it easier for the parents to give her good care then ultimately this is of benefit to make al thier lives a little more bearable.

But who has the right to play God ? Shouldn't nature be let to run it's course and she be able to live out her life naturally.

In Pace Always
resi

Good point, but the fact is, nature is not allowed to take it's course in today's society. Previously fatal conditions are being mitigated by the use of science and medicine. Terry Schiavo comes to mind.

Id like to add by saying when poeple get these types of treatments it only opens the floodgates for other & mostly worse types of treatments, & how many poor wee monkeys got tested on before this child? which i figure was also a test subject!
i feel all these drugs for all these differnt disorders & illness's will only lead to worse diseases & disorders & a realy messed up gene pool in future generations,

do we know how many people if many at all in the times before factories, heavy industry, had severe disorders/deformities like this?

id guess disorders & deformities in humans & animals & also strains of virusus has 99% to do with the gunk & slime that factories & heavy industeries, chemical works etc produce & dump into our air & seas, not to mention all the mixings of medication people take would be ignorant too,
& i know you wont disagree with the fact the atomic/nuclear testing & deployment in war & the refining plants & also the power stations fuelled by these "wonder" energys have messed things up beyond repair & to add to that all the detergant cleaners etc we use in spays, liquids & we flush down the loo & sink, big probs there!

so that leaves my guestimate with the remaining 1% on nature/genetic flaw,

Clean air Clean water Clean streets is way too much to ask for, the goverment would just laugh in your face for asking for these things, all we can realy do is engage in a clean way of living, use less detergants etc & just get the soap & roasting hot water out & get scrubbing (which i do constantly & no im not a clean freak, AM I?)

My wee cousin has seribal paulsey & thankfully its only his ankles that are effected & his problem is that he cannot put his feet flat on the floor he walks on the ball of his feet (his tip toes) his mucles wont relax enough for him to walk properly & he has to wear splints, he did go in for snake venom treatment but it had great effect & what but it did not last the week,
he is a very intelligent wee boy & asks alot of questions of everything
(he never ever ever ever stops) he goes to regular school so apart from walking on his tip toes hes cool,

im sort of ok with the fact that venom was used to treat him after all its made/evolved naturally, it did work for about four days & he was running around like he was on fire playing football untill the sun went down,
but the treatment ive read in your post is a bit too sickening & scary to think about its a disgrace to all that is human,
(shrink them down as if out of sight out of mind?)

[edit on 2-11-2006 by eddie666m1980w]

eddie...

your post gives one much to think about.

I need more time to digest


In Pace Always
resi

The manipulation of natural human growth to make it more convenient for parents to care for a severely disabled child...this leaves me rather stunned.

I can see parents wanting to keep the child and fulfill the parental needs and wants...ultimately it needs to be decided at some point what's actually best for the child and NOT the parents.

There have to be other health concerns with administering such hefty doses of hormones...enough to actually stunt the growth of a little one.

Maybe in this case the parents aren't the best caregivers for the kiddo?

It's a tough call though glad I was never forced to make a decision like that...if I was though I would likely opt for an out of home care arrangement and visit daily...sometimes that is the best option even though having them at home with the family is naturally what would be desired. Especially if the family has other kids to tend to...a disabled child can put an amazing strain on a family unprepared or unable to cope.

I try to see both sides but really I don't think I agree with stunting the natural growth to make life easier and more convenient. Moral issues...

Originally posted by resistancia
I am saddened by this and in two minds.

I think if it makes it easier for the parents to give her good care then ultimately this is of benefit to make al thier lives a little more bearable.

But who has the right to play God ? Shouldn't nature be let to run it's course and she be able to live out her life naturally.

Then there is the issue of the drugs and further damage this may have casued.

On a par with stem cell research I think.


In Pace Always
resi

The only problem I have with this is that more and more of these children that should have died at birth or very soon after but were saved by modern medical procedures. If nature were to run it's course then perhaps she would not even have made it to this age at all. It's as much, if not more, a moral question than the parents trying to make the life a child more comfortable since science has "saved" her.

Developments in medical technology in the last century have significantly increased the number of treatment options available to newborns in need of medical intervention for survival.

lsr.nellco.org.../cpilj
-Jeannine Wyszkowski, University of Connecticut School of Law, 2004


edit for broken link

[edit on 11/2/2006 by Katolu]

These and many other ethical problems await us as we begin a new age of medicine, and genetic manipulation and therapy...

some others:
designer babies
chosen gender
gene therapys that offer better health, but at an unknown tradeoff
GM foods that might lead to new deadly allergic reactions.

I feel that while this is, on the surface, a bad choice... in the long run, it is the practical one, considering the options are earlier death, for all involved.

I have a feeling that "practical" will replace ethical, as the conundrums increase.

Originally posted by resistancia
I am saddened by this and in two minds.

I think if it makes it easier for the parents to give her good care then ultimately this is of benefit to make al thier lives a little more bearable.

But who has the right to play God ? Shouldn't nature be let to run it's course and she be able to live out her life naturally.

Then there is the issue of the drugs and further damage this may have casued.

On a par with stem cell research I think.


In Pace Always
resi

I couldn't agree more.... from the late 20's into the 70's here in the south (and perhaps other places in this country as well but I do not know) the state forcibly sterlized the simple and the disabled. My former upstairs neighbor was one of these. Should she have had children? No she could barely take care of herself...still playing with dolls at 62 but her only "crime" was being slow but who are we to say whether she would have made a good mother or not? We flirt too closely with playing God as it is.

Doctors that are manipulating and changing the course of nature, like the ways spoken of above, remind me of an old commercial.

"It's not nice to fool with Mother Nature"

Originally posted by Keyhole
Doctors that are manipulating and changing the course of nature, like the ways spoken of above, remind me of an old commercial.

"It's not nice to fool with Mother Nature"

Please, permit me to edit:

It's unfathomably stupid to dick with Mother Nature.

I don't see a problem. Many health care workers suffer debilitating back problems as a result of caring for these disabled people. It would be alot easier for their own health while taking care of the healt of someone who can never really do anything eh?

All I can think of is the heartbreaking situation of having to be the position to even consider this option. I don't particularly have a personal opinion on whether the decision was right or wrong. I just feel so sad for the entire family I can't think past that.

Well now this is me personally, and it may seem cold to many, but I do not fear letting a child or anyone in that position being released into the hands of God. There is no place left on this mortal plane for someone in a continuous vegetative state, but of course that is a call that should only be made by the direct relatives.

I have a friend who is a neonatal intensive care nurse practitioner, she works with the very sickest babies. Occassionally I will ask her "how the babies are?" She gets upset when they have preemies (like 21 weeks) who have heroic life saving measures performed on them and then die days later after brain bleeds, pain, and trauma, or go home months later to lead a severly disabled life. Now before you all jump on me let me just say, as a mom to four children, I don't know if I could let any of my babies die without intervention. I think it's very easy to say, "let's get past this emergent situation and then deal with the aftermath." The goal would be to have the baby live, but under what circumstances? To say that giving estrogen shots is against mother nature? That ship sailed once the baby was hooked up to a small power plant, given IV fluids and fed through a stomach tube! The estrogen treatment was offered to me for my oldest daughter who is a braniac, and beautiful. Her perceived probelm? She was 2 feet tall when she was born and at 10 years is wearing a woman's 9 1/2 shoe. I had some "Janet Reno" issues and the doctor told me they could give her shots to bring on her period early, after a girl gets her period, the medical thinking is that they only grow 1-2 inches. I did not opt for the treatment. Now my sweet 10 year old looks like a 14 year old, a burden for her but I am not comparing her situation in ANY way to this child's-just saying we interfere with nature more than we may think.

I also have a friend who has a teenage son with (I'm not sure if I can't spell it), akenoluekodystrophy which is the disease portryed in Lorenzo's Oil. her son did not present with symptoms until he was a young boy. Her worries, aside from keeping him healthy, are her ability to care for her son as he ages and grows. She's in amazing shape and is still able to lift him and care for him. He is not the size of a normal teenage child, his disease has taken a toll on his growth. I don't know if she would opt for this treatment if it were available to males, but I know her biggest worry is caring for her child. I can understand that. Could any of you parents out there actually send your child away to strangers? I don't think I could, I would be desperate to keep my baby home.

As a mother of a child like this, I would like to voice my opinion. Kayla is gone, now...she died last year of what we and her doctor believe to be multiple seizures that she never came out of. She was 12 yrs. old. We all loved her very, very much.

That said, I believe that much more research should be done into what the estrogen does to the child, and also, what other alternatives could be tried to attenuate growth. I want to know exactly what will happen to every part of her little body when they do any procedure like this. No guesswork, if at all possible. I know someone's child has to be first, but please do enough research to be adequately sure of the outcome.

I also believe that it would probably be a good thing to attenuate growth under these circumstances. Believe me, I thought long and hard...and cried for about a half hour. I remember mostly good times and my sweet daughter, but I also remember our struggles. It is very hard to take care of these children as they get bigger, and after years of strain, the caretakers' arms and backs start to go.

I would like for mothers to be able to cuddle their infant-like children without pain (or at least without too much pain). The children and the mothers need this. To be able to bathe them easier, get them in their wheelchairs easier...it's worth so much to all involved!

But never hurt these children to achieve this! If the poor dears could avoid suffering from menstrual cramps and all that goes with that...yea! But no experimenting! Do the research!

I also believe that it could have been the onset of puberty, and the hormone surges that could have precipitated my daughter's seizures. If puberty could be avoided, especially in epileptic, severely disabled children, that might be a Godsend for all involved.

This is all just my opinion; however, I wrote it for Kayla, with all my heart.

FibroKat,

Thank you for sharing that. I'm sorry for your loss. But I'm glad you had your 12 years with your angel. These situations break my heart just hearing about them, so I can't even imagine what you've been through. My older sister lost her 15 year old son in 1989 and it was the worst thing I've ever seen anyone go through. God bless you.

Thank you, very much, Valhall. I really appreciate your support. It means a lot coming from someone with whom I hold such regard. God Bless you and yours, also.