Posted on 11/01/2006 4:38:55 PM PST by Piefloater
IN a controversial treatment, doctors in the US have given a severely disabled child drugs to keep her small and 'manageable' for her parents.
In a report published in a medical journal this month, the doctors described a six-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, doctors Daniel F. Gunther and Douglas S. Diekema, both at the University of Washington in Seattle, explained the reasoning behind what they hoped would generate healthy debate.
Dr Gunther is at the Division of Pediatric Endocrinology, and Dr Diekema is at the Centre for Pediatric Bioethics.
Caring for children with profound developmental disabilities could be difficult and demanding, they said.
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.
(Excerpt) Read more at news.com.au ...
That didn't take long.
Me either. And I think the people who are criticizing these parents and doctors should be sentenced to spending a couple of weeks caring for a full size adult with the mental ability of an infant. Reality checks are a healthy thing.
A friend of mine works full time for a respite care center for mentally and physically disabled "children" up to age 21. She is perpetually covered with bruises from doing this 8 hours a day (for a pittance in wages). The bruises are inflicted by large mentally disabled "children" whose parents often haven't had a 16 hour break, much less a weekend break from this burden in many years.
A friend of mine works full time for a respite care center for mentally and physically disabled "children" up to age 21. She is perpetually covered with bruises from doing this 8 hours a day (for a pittance in wages). The bruises are inflicted by large mentally disabled "children" whose parents often haven't had a 16 hour break, much less a weekend break from this burden in many years.
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It's not for me to condemn these parents. I don't know that I would have done as they did, but I have no frame of reference. I can also imagine that they would fear not only what would happen to their child as they age, but after their deaths. It's sad, and must be so stressful at times.
Your friend must be an exceptional woman.
No, that's an insult to the medieval world. I don't think that in 13th century Paris or 14th century Padua they ever deliberatedly stunted a child's growth and removed major organs in order to make the child easier to handle.
Options were not plentiful back then --- in fact, a child like this may well have died in infancy because of not being strong enough to suckle well --- but a surviving child with severe mental handicap might have been cared for humanely with the help of neighbors and friends of the parents, or by nuns in a hospital or convent.
Do you know where the wor "cretin" comes from? It is from the French for "Christian" (chrétien) --- and it was appalied to children of low mentality in order to remind people that they were still "Christians," by which they meant, babies who have been baptized and therefore are especially cherished by God.
As in, "Be kind to the Enfant chrétien"... the Christ child.
"Where the heck are you people when circumcision threads come up?"
Right here. I'm against circumcision.
And you? What's your stand on "deliberately pursuing abnormality"?
And by the way, as I said elsewhere (#92), I don't blame the parents. I think they were offered inhuman options.
The mother and father, who are clearly deeply caring people, need help with their daughter. Church, community, charity, insurance, public agencies should provide that, if they can't provide it themselves.
Many people have caregivers who come into their home every day. We have CNA's coming into our home 7 days a week to help care for my father, 92, who is severely mentally and physically debilitated, and weighs 140 pounds. I couldn't do this on my own.
These parents need and deserve help: not high-tech, but high-touch. I repeat, they need CNA's and caregivers --- real human-scale compassionate assistance: not this cruel no-choice option of maiming their poor daughter.
The hysterectomy makes sense; if one accepts the idea of using estrogen to turn her into a Hobbit.
If she's small, yet fertile, a pregnancy could kill her. How could she get pregnant you ask? Let's say that the ultimate goal of the growth stunting doesn't work and she still becomes too much for her parents to care for. If that happens, then she would likely be institutionalized. Young women in such conditions have been sexually assaulted before. Some of them have become pregnant as a result. If this were to happen to her, the results could be disastrous.
Since they are keeping her too small to safely bear children, sterilizing her makes sense.
Nothing like the reality check of a 200 pounder with the mind of a 2 year old pitching a tantrum....or biting.
I agree. Shouldn't the government "Child Services" people be showing up to the door of the Doctors and parents? They're probably also concerned that she'll use up too many precious "resources" like food and such.
I had a female cousin who was severly retarded and crippled, basically an invalid. She started her period around age 13 and lived to age 25. Her mother and grandmother had to deal with that along with feeding and changing her. They went through a LOT. Thankfully, she was put into a nursing home around age 18. The mother worked at the nursing home and the grandmother visited several times a day. THe situation was SO very sad.
A child with normal intelligence is not going to rely upon me for care. As children grow bigger, they naturally take on their own physical care, etc. It simply isn't necessary or practical.
As I said above, I am in favor of the hysterectomy. The child will never be in a position to parent, give consent to sex acts, or understand her body's function. The benefit (no worries about pregnancy, no dealing with menstruation, no worries about diseased organs) are worth the removal of those organs.
To be honest, I am not sure where I stand on the stunting. That is why I have stated that I'm not sure it is unethical. To be sure it "feels" wrong to me. But explaining why, to myself, is difficult and I am arguing back and forth with myself.
I absolutely agree that these parents would be better off if help were plentiful. Sadly, I'm not sure it is.
I once saw a news show with a mother and her Down Syndrome daughter. The daughter was in her 20's, and could hold a job and ride the bus, but still needed the support of living in her family home. The woman liked sex and found plenty of "men" to have sex with her.
She was in no position to parent, she couldn't fully understand what pregnancy might entail. Her mother had no power to keep her from leaving the house. The mother wanted to have her sterilized, but the daughter needed to consent. After explaining the operation to the daughter, the daughter refused. Not because she wanted to have a baby, or for any thoughtful reason, she was simply afraid of having an operation (as most young children are).
The mother was the one who would have to bear the brunt of the responsibility for a pregnancy, and yet she was completely powerless.
Actually, that is not true. Most deaf people who never had hearing would not want to hear; often the extra input causes white noise (as in hearing aids) or they struggle to interpret the sounds they never heard before.
So, what is your answer?
It's clear that the hysterectomy and the stunting are being offered to the girl's parents, as inadequate and rather cynical substitutes for what they really do need. A hysterectomy is offered in place of effective protection from rape; the stunting is offered in place of competent in-house CNA's.
The assistance agencies are saying, "We won't protect your daughter from being raped by some abusive swine; we won't provide you with caregivers in your home; and in each case your daugher will have to pay in the flesh by having organs cut out and normal growth intentionally destroyed."
"We can't give you ordinary decent human support, but we can cut your daughter down to size."
By way of contrast: through our regional Medical Center Home Hospice program, and funded by Medicare, we have truly wonderful help for my profoundly mentally debilitated, frail 92-year-old father. The CNA's who come in to assist us are competent, kind-hearted, knowledgeable, and utterly loyal and dependable.
Why is there no such human-scale practical nursing care available for this girl and her parents?
They need a hand; they're being given a knife.
Is that a choice? Or are they submitting their daughter to this radical physical diminishment because they feel they have no choice?
Still not the same.
1. It is the same.
2. You prefer not to answer.
This sort of reminds me of what Joe Kennedy did to his daughter on the advice of Doctors of that era. It only made matters much worse and made nothing better. They suffered with that for the rest of their lives, I am sure.
Yes, Rosemary; same sort of thing. He had her lobotomized. Something went wrong and thereafter she was incapable of taking care of herself or leading anything like a normal life. She spent the rest of her life institutionalized. There was a sexual side to that case, as there was for the little girl who was intentionally deformed. Joe was afraid that Rosemary would become promiscuous. Hmm... I wonder if they did a little snipping on organs other than her brain?
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