Should Severely Disabled Kids Be Kept Small?

[cathoholic_anonymous]

It decreases it, because the child is being denied her dignity. She's become a hothouse plant, to be modified and cultivated just as her parents and the medical establishment see fit. Some might argue that a profoundly disabled child has no concept of dignity anyway so an action like this doesn't really matter, but people who know how precious one human being is to God should be showing the same respect to this little girl's body as they do to their own.

[RC_]

Would not being able to stay with a loving family increase thier human dignity and quality of life?

My mentally disabled brother, who is unable to care for himself, is going to stay in the family. We are not going to send him to a "home" when he gets older. Granted, he has no physical problems, so the practice of delaying his growth hasn't come up, but my parents would do whatever was needed to keep him in the family.

I'm not saying that she and other children like her have no dignity anyway. I am all for preserving thier dignity that is innate in everyone.

I'm really torn about this. CA- provide more arguments for why you beleive this practice is wrong.

[Azriel]

I'm sorry, but you do not tamper with your child's growth to make it easier on yourself.

My Godson was 6 1/2 when he passed, and had the mentality of a 1 year old, and couldn't walk. He weighed over 50 pounds. Was it a struggle to care for him? Yes! But when you are doing everything to give your child as normal a life as possible, while would you do something so completely unnatural.

My heart breaks for this child, and her family.

[Mary-Kathryn]

[quote name='RC_' post='1108936' date='Nov 2 2006, 04:16 PM']
Would not being able to stay with a loving family increase thier human dignity and quality of life?

[color="#6666CC"]A forced physical change is not quality of life. A forced hysterectomy on a child of 6 is not showing any respect or dignity. She's not a lab rat, but a human being no matter what disability or lack of communication skills she may have. [/color]

My mentally disabled brother, who is unable to care for himself, is going to stay in the family. We are not going to send him to a "home" when he gets older. Granted, he has no physical problems, so the practice of delaying his growth hasn't come up, but my parents would do whatever was needed to keep him in the family.

[color="#6666CC"]I would do anything for my son as well--but not this. Hopefully, my son will always be with me. The thought of him going to a "home" or other facility is unbearable. But I will not change what God has given me. I will not re-arrange the human being he is, to alleviate my fears and suffering. God created him. Who am I to make him less[/color]?

I'm not saying that she and other children like her have no dignity anyway. I am all for preserving thier dignity that is innate in everyone.

[color="#6666CC"]I know that. We both come from the same place and live it day-to-day so this is tough.[/color]

I'm really torn about this. CA- provide more arguments for why you beleive this practice is wrong.

[color="#6666CC"]I hope you find the answers that help. Mine is from a real personal view, rather than an objective outside view. I hope the words don't come off wrong. Sometimes the printed word doesn't translate as kindly as the spoken word.[/color][/quote]

[RC_]

No, they didn't come off wrong. We both apperantly are looking at this from a personal angle.

[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.