Should severely disabled kids be kept small?

  • Thread starter Thread starter contemplative
  • Start date Start date
Status
Not open for further replies.
C

contemplative

Guest
Should severely disabled kids be kept small?

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.
Click to expand...
That is the title of the article…Should severely disabled kids be kept small?
 
Ethical? I think they are using a very perverse definition of ethical. Sounds like something Peter Singer would come up with. 😦
 
NO, NO, NO!! I am personally involved in the care of my sis-in-law who happens tp be DD. She relies on those around her for her very life. Taking care of her would not be any easier or more difficult if she were the size of a 6 year old.

Love and peace, mom of 5
 
This case carries a strong smell of eugenics. What was done to her, the drugs and the sterilization, shocks and worries me.
 
Dale_M said:
This case carries a strong smell of eugenics. What was done to her, the drugs and the sterilization, shocks and worries me.
Click to expand...
I agree. I was thinking the same thing as I read the article. Margaret Sanger and her group would have been very proud of this treatment. Very worrisome and very sad. 😦
 
My gut reaction is pretty much the same as the previous posters…it is dead wrong to use chemicals and surgery to keep a living human portable and convenient to carry around…all I can think of is those poor Asian women who bound their feet…or space bags. :eek: How would the parents feel compressed into a space bag? Is all seems rather freaky.
 
contemplative said:
That is the title of the article…Should severely disabled kids be kept small?
Click to expand...
Oh dear, that article describes a terrible injustice to the child. I thought this thread was going to be a question about how much nutrition to give, (such a feeding tube formula or such) when a disabled child is overweight.
 
I can’t even imagine the stuff that the “medical profession” will come up with in the coming years. I don’t even want to think about it. Why not stick the child in a self-sustaining pod so the parents don’t have to do anything but refill the feed and empty the waste.
 
Pug said:
I wonder how they think small will help? Is she violent, so that small makes it so that she can be more easily restrained without special facilities?
Click to expand...
From the article…
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 only legitimate reason I can think of to limit a child’s growth would be if normal growth would inevitably lead to suffering in the child herself…for instance, if getting bigger would inevitably lead to very labored breathing, would lead to serious confinement, or would cause great pain in the joints or muscles. The seriousness would be along the lines of what would necessitate an amputation, though.

I do not have the medical background, however, to know if this is ever the case in a country where proper care is available.
 
Karin said:
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.
Click to expand...
Karin, I remember reading that yesterday (when I first looked at the thread), but I wondered. Adults who are bedridden and dying are cared for in the home. I suppose those adults can at least respond enough to move their arms to help you as you move them. Also those dying folk aren’t likely to get out of bed. So the caretaker won’t have to try to get them back into the bed. A fully able, but cognatively impaired large person can get out of bed. I guess I didn’t mean violent, I just meant able-bodied and likely to move about, so restraint might be needed?

It would be easier to stop a six year old from running outside the house than it would be to stop a 190lb adult. I guess I wondered if supervision was partly the issue.
 
Certainly not, but my reaction is that it would not be seen as so “necessary” if there were adequate medical care for the disabled. It is quite a heavy load for only 1 or 2 people, but what if there were visiting helpers of some kind? I’m not adequate to have it all layed out, but killing people or mutilating them as some kind of macabre medical care is certainly **not **the way to go. Dr. Mengele phone home.
 
As a person with dwarfism, I find this profoundly disturbing. I cannot find the words to respond.
 
kage_ar said:
As a person with dwarfism, I find this profoundly disturbing. I cannot find the words to respond.
Click to expand...
I am sorry but perhaps I am not seeing what you are trying to say…
but this is a normal child that has severe mental and physical issues…Here parents wish to continue to care for her but know that if she grows to adult size they will not be able to do this (perhaps) how are you comparing this to dwarfism?

Sorry please let me add…I do not agree with what these parents have done …they have basically mutilated their child in more than one way !!!
 
My SIL is 3/5 year old in a 62 yr old body. She was not expected to live past age 18. She has outlived both parents, I am her official caregiver, my husband is her legal guardian. Sis is a lot of work, no doubt. She can be sweet and loving and then very stubborn. After eight years of caring for her, I could write a book. I do have respite care, though would welcome more, especially when she has had some severe medical problems. Sis has a bad heart along with other physical problems.

“Susie” is among the fortunate of her age. Her family kept her home and took fantastic care of her. Many at that time were institutionalized. There are many more like her, being cared for by family or in adult homes. These are the “angels” among us who teach us what is really important in life. They show love and appreciation for every kind act towards them. I get more hugs and kisses than I have ever imagined. Yes, I can be impatient and get tired, but the very thought of anyone changing anything about her, size, etc. turns me cold. I know that some day in heaven, she will be made whole. I can only hope that she will take my hand and help me to heaven.

Love and peace,
Mom of 5
 
Status
Not open for further replies.
Back
Top