Should Severely Disabled Kids Be Kept Small?

[cmotherofpirl]

Should severely disabled kids be kept small?
6-year-old given hormones to stunt growth so parents can care for her
Reuters
Updated: 6:23 p.m. ET Nov 1, 2006
NEW YORK - In a report published in a medical journal this month, two doctors describe a 6-year-old girl with profound, irreversible developmental disability who was given high doses of estrogen to permanently halt her growth so that her parents could continue to care for her at home.

The controversial growth-attenuation treatment, which included hysterectomy, was requested by the child's parents and initiated after careful consultation and review by an ethics committee.

In their report in the Archives of Pediatrics and Adolescent Medicine, Drs. Daniel F. Gunther and Douglas S. Diekema, both at the University of Washington in Seattle, explain the reasoning behind what they hope will generate a healthy debate. Gunther is at the Division of Pediatric Endocrinology, and Diekema is at the Center for Pediatric Bioethics.

Caring for children with profound developmental disabilities can be difficult and demanding, they note. For children with severe combined neurologic and cognitive impairment who are unable to move without assistance, all the necessities of life — dressing, bathing, transporting — must be provided by caregivers, usually parents, and these tasks become increasing difficult, if not impossible, as the child increases in size.

"Achieving permanent growth attenuation while the child is still young and of manageable size would remove one of the major obstacles to family care and might extend the time that parents with the ability, resources, and inclination to care for their child at home might be able to do so," Gunther and Diekema write.

The parents of the 6-year-old, both of whom were college-educated professionals, indicated a strong desire to continue caring for their daughter. Despite having the neurologic development no greater than that of an infant, the 6-year-old responds to her parents and two healthy siblings — vocalizing and smiling in response to care and affection — and "clearly is an integral, and much loved, member of the family," the authors note.

After extensive evaluation, the combined opinion of a team of specialists is that the child will have no significant neurologic or cognitive improvements.


The onset of puberty and continued growth caused concern in the parents about how they would care for their daughter long-term, which they clearly wanted to do. They were concerned about having to turn over care to "strangers" and also about the complications that would arise when the child started menstruating.

The child is now a little more than a year into growth-attenuating therapy and approaching the end of her growth, Gunther and Diekema report. "As of yet, there have been no treatment complications."

The authors feel that growth arresting therapy can be "both ethical and feasible and should be an option available to parents."

The authors of a commentary applaud Gunther and Diekema for publishing this case report, although they believe that attempts to attenuate growth are "ill advised."

Nonetheless, Dr. Jeffrey P. Brosco from the University of Miami and Dr. Chris Feudtner from the University of Pennsylvania, Philadelphia, say that by beginning the debate, this paper helps to "advance our ethical dialogue as we struggle to define our core values in words, laws, and deeds. Only with further research and public discussion will we learn whether attempts to attenuate growth run with or against our fundamental values in caring for children with profound developmental disabilities."

Copyright 2006 Reuters Limited.

[Guest T-Bone]

I'm sure certain members of this forum will contrue this as an injustice and label her parents as evil, but I can tell the parents of this young girl have thier heart in the right place.

[Red Knight]

I agree T-Bone that their hearts are in the right place, however, the treatment appears to be a selfish reaction. It's a diificult situation, no doubt, I'm am not sure what the right answer would be.

[cmotherofpirl]

Having helped care for a severely handicapped child who was already 5'9" at age 14 I can understand where the parents are coming from.

[RC_]

Wow...

That's a hard one.

I beleive that the parents that do this have good intentions.

I beleive that the parents that do this would not be able to care for their children once they reach adulthood.

I beleive that the parents want to keep these treasures in the family, and not send them away.

I beleive that this is an act of love.

I am unable to see how these actions go against Catholic teachings.

I do have a physical disability. I personally would not have wanted this particular thing done to myself, even if I was unable to assist with my self care. I also would have wanted to be able to stay with my family if I was unable to assist with my self care.

[quote]Nonetheless, Dr. Jeffrey P. Brosco from the University of Miami and Dr. Chris Feudtner from the University of Pennsylvania, Philadelphia, say that by beginning the debate, this paper helps to "advance our ethical dialogue as we struggle to define our core values in words, laws, and deeds. Only with further research and public discussion will we learn[b] whether attempts to attenuate growth run with or against our fundamental values in caring for children with profound developmental disabilities."[/b][/quote]

If they run with the current medical profession's values in caring for persons with profound disabilities, that would be a very said thing. (ie. Terri Shivo.)

[Mary-Kathryn]

No.

This is the ultimate in selfishness. The child has a right to grow naturally. We all face these fears as special needs parents. For parents of profoundly involved children their cross is heavier to bear, but physically altering your child this way is not acceptable. The hysterectomy of a child at age 6 was certainly out of control.

Let the child be. Let him/her grow. Go from there.

[IcePrincessKRS]

That is a tough one... On the one hand I can understand wanting to stunt the child's growth to a certain extent to make caring for her easier... but I have to agree with Mary-Kathryn, too, a hysterectomy on a 6 year old just seems to be taking it to the extreme.

[KizlarAgha]

I think the parents are doing the right thing in this case, with a couple of caveats. Are there adverse health consequences to doses of hormones at such a young age? I know quite a bit about high doses of estrogen and they're fairly safe. Blood clots are the biggest concern and are common with both estrogen and oral contraceptives which contain estrogen. However, I don't have any clue what those doses would do in a child in terms of side-effects. I'm going to forward this to one of my university doctors and see what he has to say in terms of the possible negative health consequences.

[RC_]

I do not see the parents as selfish. I see them as desperate people in a hard situation.

[Mary-Kathryn]

[quote name='RC_' post='1108782' date='Nov 2 2006, 01:33 PM']
I do not see the parents as selfish. I see them as desperate people in a hard situation.
[/quote]

What is desperate? This is a child--a human being who does not deserve to be neutered like an animal. This is a child who deserves to live her life naturally. Finally, this is a child who does not deserve to be physically altered in order to alleviate the worries or sufferings of another person.

[KizlarAgha]

[quote name='Mary-Kathryn' post='1108903' date='Nov 2 2006, 03:46 PM']
What is desperate? This is a child--a human being who does not deserve to be neutered like an animal. This is a child who deserves to live her life naturally. Finally, this is a child who does not deserve to be physically altered in order to alleviate the worries or sufferings of another person.
[/quote]

I think if the child were mentally capable of making the choice, she would be willing to make a sacrifice for her parents who have sacrificed so much for her. If I were in a position where I needed constant care, I would certainly want to make it as easy on all involved as possible, even if that meant sacrifices on my part.

[RC_]

[quote name='Mary-Kathryn' post='1108903' date='Nov 2 2006, 03:46 PM']
What is desperate? This is a child--a human being who does not deserve to be neutered like an animal. This is a child who deserves to live her life naturally. Finally, this is a child who does not deserve to be physically altered in order to alleviate the worries or sufferings of another person.
[/quote]

They are not neutering her like an animal. You neuter an animal to controll reproduction. They are performing the hysterectemy for a health benifit.

A disabled person has a right to live with people who love them. This dear soul would not recieve this right unless this procedure happened.

[KizlarAgha]

Plus it opens up a whole new bio-engineering fashion. Imagine, you could keep your eight year old children cute forever! Hmmm....

[cathoholic_anonymous]

It's a painfully difficult question with no clear-cut answer. Although I sympathise with the parents' motives - they clearly love their daughter very much - I do think this action is unethical. People often assume that 'having a good quality of life' equals 'having a life that is easy to manage', but that just isn't so.

[RC_]

Here's a question:

Does this increase or decrease an individual's quality of life?

[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.