Should Severely Disabled Kids Be Kept Small?

[catholicinsd]

I can see both sides this issue, don't which ine I agree with more though.

[HeavenlyCalling]

I agree with some prevous posters, she is not a lab rat, and even though it does seem like they truely care about the gift God has given them, I do think that this was pretty selfish of them, I mean, she is a human, not a science expirament.

[Kosh]

No. Stunting growth like that is...wrong.

that being said, i feel terrible for the parents. Great that they persevere like that. God be with them.

[Socrates]

NO they should not!

They should be grown as large as possible! Stuff 'em full of growth hormones and protein! Super-size 'em I say!

Then my army of giants with infantile minds will be able to take over the world! Mwahahahaha!



But seriously, folks, I think this is one of those moral "grey areas." Let the parents decide.

[cmotherofpirl]

My friends daughter is 5'9" and still growing at 14. She will keep growing, and already outweighs her mother. She is non-verbal and when angry lashes out with her fists. Wiping feces and blood off the walls is not a pleasant task. Her mother has already had one heart attack caring for her, trying to manuver her from bed to wheelchair. Yes they have money, yes they have help, but in the end its the mom who bears the brunt of the work.
If she had chosen this option, I might not had agreed with it, but I certainly would understand it, and could not condemn it.

[Socrates]

If kept small, they can fit in most overhead storage compartments.

[IcePrincessKRS]

See, I'm really torn. I am completely and totally moved by the people who live with these situations. I can understand why the parents opted for the "stunt her growth" option... I just don't think giving a 6 year old a hysterectomy is right. Couldn't they have done something to keep her smaller in stature without taking such invasive measures? I can't agree with the full extent of what they did. I can understand it, but I can't agree with all of it.

[2xbob]

I am going with the parents on this one. At an adult size, her parents may have been unable to care for her, in which case her quality of life would surely go. Between the estrogen and hysterectomy now or a care home later, I think the care home is far worse. Now she can remain surrounded buy those who love and care for her.

[Mary-Kathryn]

[quote name='2xbob' post='1109560' date='Nov 3 2006, 12:07 AM']
I am going with the parents on this one. At an adult size, her parents may have been unable to care for her, in which case her quality of life would surely go. Between the estrogen and hysterectomy now or a care home later, I think the care home is far worse. Now she can remain surrounded buy those who love and care for her.
[/quote]

You forget one thing: God is in charge, not humans. I would never alter my child to alleviate my suffering. In the end, this is the root of it all. Our suffering [or the fear of it] is too much to bear. Or so we think. Now that my son is grown, I have come to realize that what is before him is not going to be all that I hope for. I can plan for him to the last detail, but his life stretches before him....yet mine does not. Does that scare me? You bet. In this world no one will love him as his mother. But I cannot predict where his life will be when he is 40, much less 60. I can hope, but I have to let go and pray to God.


Also, I wonder how much research they did into alternative care? There are services available [such as home health care nurses who come and daily nursing aides] sometimes other types of facilites are available for during the day also. Respite care is available along with support groups for caregivers. I've run into parents of young children who are still feeling their way through the complicated maze. Heck, I'm starting all over now that my son is an adult! It's a huge overload in the beginning. I don't think they researched this area enough by any means and the question remains if they were taken advantage of by some doctors.

At any rate, messing with any human being to make it easier for yourself is so immoral I can't even begin to comprehend how someone can justify it. Deep down this is a throwback to the attitude of believing that the disabled are somehow less than human. [not the parents but the ones who brought this to them] If someone were to take a "regular" child and do this, the outrage would be over the top. A disabled child? mask it in mercy and love, and everyone goes awwwww.

I do not need to change my son to suit my comfort level. And yeah...he's bigger than me--though not profoundly involved as this child and is ambulatory. I do not need to play God. You trust God or you don't. I don't make His Decisions. When there was a medical need for surgery, sure he had them. But to inflict damage to make it easier for myself-never. I'd have an awful lot to answer to.

[cmotherofpirl]

You can have all the respite care in the world and it doesn't erase the burden on the parents. Most states or insurance companies refuse to pay for 24 hour home care, there simply isn't enough money to go around, they tell you to put the child in a state home and give up your rights. The burden always falls on the loved ones unless your named Trump.

Before this was approved, I would assume all options for this child were fully discussed. These are not quacks.



Attenuating Growth in Children With Profound Developmental Disability
A New Approach to an Old Dilemma

Daniel F. Gunther, MD, MA; Douglas S. Diekema, MD, MPH

Arch Pediatr Adolesc Med. 2006;160:1013-1017.

Caring for children with profound developmental disabilities can be difficult and demanding. For nonambulatory children with severe, combined neurologic and cognitive impairment, all the necessities of life must be provided by caregivers, usually parents, and these tasks become more difficult as the child grows to adolescence and adulthood. Many parents would like to continue caring for their child with special needs at home but find it difficult to do so as the child increases in size. If growth could be permanently arrested while the child was still small, both child and parent would likely benefit because this would facilitate the option of continued care in the home. Treatment of the child with high-dose estrogen, initiated at an early age, could provide this option. High-dose estrogen both inhibits growth and rapidly advances maturation of the epiphyseal growth plates, bringing about permanent attenuation in size after a relatively short period of treatment. We present a case report and discuss the medical and ethical considerations of such an intervention strategy. We suggest that after proper screening and informed consent, growth-attenuation therapy should be a therapeutic option available to these children should their parents request it.

Author Affiliations: Division of Pediatric Endocrinology (Dr Gunther) and Center for Pediatric Bioethics (Dr Diekema), Department of Pediatrics, Children's Hospital and Regional Medical Center, University of Washington School of Medicine, Seattle.


RELATED ARTICLE
Growth Attenuation: A Diminutive Solution to a Daunting Problem
Jeffrey P. Brosco and Chris Feudtner
Arch Pediatr Adolesc Med. 2006;160:1077-1078.

THIS ARTICLE HAS BEEN CITED BY OTHER ARTICLES
Growth Attenuation: A Diminutive Solution to a Daunting Problem
Brosco and Feudtner
Arch Pediatr Adolesc Med 2006;160:1077-1078.

[Azriel]

[quote name='Mary-Kathryn' post='1109735' date='Nov 3 2006, 10:34 AM']

At any rate, messing with any human being to make it easier for yourself is so immoral I can't even begin to comprehend how someone can justify it. Deep down this is a throwback to the attitude of believing that the disabled are somehow less than human. [not the parents but the ones who brought this to them] If someone were to take a "regular" child and do this, the outrage would be over the top. A disabled child? mask it in mercy and love, and everyone goes awwwww.


[/quote]


So totally agreed. The disabled are still looked on in our society as "less than" And then we run into a problem of when is a enough, enough? Wouldn't it be easier on the parents ultimately if they had euthanized the child? But none of us would advocate that.

I understand their pain, but I cannot see this as anything but morally reprehensible.

And quite frankly the term "informed consent" makes my skin crawl.

[cmotherofpirl]

I could not do it, but after helping take care of one of these kids, I can understand why they did it.

[RC_]

[quote name='Azriel' post='1109811' date='Nov 3 2006, 12:30 PM']
So totally agreed. The disabled are still looked on in our society as "less than" And then we run into a problem of when is a enough, enough? Wouldn't it be easier on the parents ultimately if they had euthanized the child? But none of us would advocate that.

I understand their pain, but I cannot see this as anything but morally reprehensible.

And quite frankly the term "informed consent" makes my skin crawl.
[/quote]

You are comparing apples and watermelons here. Altering the growth cycle of a person is nowhere near the same as murder. If you can't see that, I feel sorry for you.


The parents don't want the easiest option--which would be a care home.

[Quietfire]

I have two nieces who are both handicapped. One is in a wheelchair. both are developmentally delayed. They both just turned 18.

With all the differences that my sister and I have had concerning religion, it matters not when it comes to those girls. She may have moved to Arizona, but she knows that one phone call would have me there at her side in a heartbeat.

I miss them all.
But the idea of altering a childs growth so that their care could be managed better sounds so selfish.

Sure, I remember fondly how cute the girls were when they were younger, but they're both beautiful young women now, disabilities or not. It has been a honor watching them grow.

I could never imagine taking that away from them.

[RC_]

I still don't see any selfishness in the parents' actions.

They may be misguided, but they are not being selfish. If they were being selfish, they'd ship thier child off to a home. They're trying to give their daughter the best care they can.

[KizlarAgha]

I hate to bring this into it, but there would probably be less discrimination from the public. I've found that developmentally disabled teenagers and adults often aren't looked upon with the same sympathy as developmentally disabled children.

[Mary-Kathryn]

[quote name='cmotherofpirl' post='1109749' date='Nov 3 2006, 10:59 AM']
You can have all the respite care in the world and it doesn't erase the burden on the parents. Most states or insurance companies refuse to pay for 24 hour home care, there simply isn't enough money to go around, they tell you to put the child in a state home and give up your rights. The burden always falls on the loved ones unless your named Trump.[/quote]


Is our burden supposed to be eased? Is our suffering supposed to be as any 'mainstream" parents? Who knows, but the sooner you stop running, the better you'll do. Finding the solution comes with time, not with a couple of articles. We are called to walk...not a higher...but a different...path. It's full of alot of unknowns and alot of fears. Those fears don't get any easier as the child gets older, but if you let them overtake you, you can drown in them. I can't help but think,this may have helped push these parents. They drowned [with alot of help from some alarmist doctors] I don't know what it's going to be like in 10 years for my child, heck I don't know if I'm going to be alive or if he's going to be alive. He's a healthy boy, so I place my bets on him. : I can't count my days, only God can.

What I can do for him is to just let him have his life and try to plan for others to care for him. If I live long enough, that day will come. I may one day be too frail to help with his daily needs, or too absent-minded for his medicine, or to remember his many appointments and his meal needs. I may not be able to drive him to his volunteer time, parttime job, or buddy-times if he does any of those things in the future. Who will care for him then? I am not on earth for an eternity. Trust God, plan, and let go. It's all I can do. In the end, my son's going to be OK.

In the end, it brings to light how far it is we have to go to recognize that the disabled, even the severely disabled, are TRULY human beings. I shudder to think how many future families may be encouraged to alter their children because God's Work is not good enough for us.

~now I'm pooped 'cause I'm not a debater person at ALL~

[Thy Geekdom Come]

I didn't read the whole article, but judging by the very idea, I think it's wrong. To keep a person from growing in order to keep them convenient, no matter how "inconvenient" they may be, is to stunt their development as a human person and to limit their potential. It violates human dignity.

[MIKolbe]

i think it is wrong.

the road to hell is paved with good intensions.

[cmotherofpirl]

[quote name='Raphael' post='1110068' date='Nov 3 2006, 04:58 PM']
I didn't read the whole article, but judging by the very idea, I think it's wrong. To keep a person from growing in order to keep them convenient, no matter how "inconvenient" they may be, is to stunt their development as a human person and to limit their potential. It violates human dignity.
[/quote]
I think then maybe you should read the whole article. Limiting physical growth is not the same as limiting their human potential as a human person.