If you ever saw the movie “LaStrada”, there is a quick glimpse of a retarded child with a huge head. I can’t remember why it is in the film, which is sad enough without it:: probably for shock value.But when I worked at a retarded institution, we had one such child, actually a man: Tommy.
The story begins, or rather ends, with some snooty outside inspectors asking where the staff and a lot of the “clients” had gone. They were supposed to check on them, and they weren’t there. How dare they!
So we directed them to the side ward, where they walked into a room full of people, many of whom were crying. And soon the inspectors were crying too, because they had come to inspect impersonal “clients” by monitoring paperwork, but here they suddenly were confronted that the reality behind the documents were human beings.
You see, they had stumbled into Tommy’s memorial service.
One by one, the staff (and a few of the clients) got up and gave a talk about what Tommy meant to them: About how his cheerfulness in suffering gave them a lesson in courage, how his friendliness helped them to do their very difficult job, and how they loved him…
Tommy no longer was a “client” with hydrocephalus and moderate mental retardation, a “thing” who looked like a monster to outsiders, and he no longer was a “client” whose position in bed had to be checked and documented every fifteen minutes and documented in triplicate, but a man who had friends, and who gave his caretakers, the only family he had ever known, love and hope. And they loved him back.
Then the service ended, with a hymn frowned on by the politically correct, but loved by our staff because it said what they were trying to say:
Jesus loves me, this I know
For the Bible Tells me so
Little ones to him belong
They are weak, but he is strong.
Yes, there are self important ethicists who say Tommy doesn’t meet the criteria for personhood, and the modern doctors will advise mothers to abort such children, and in the Netherlands, they will even be killed rather than given surgery if they are accidentally born.
In these days of cost controls and efficiency, where bureaucrats, not your doctor, will decide what medicines you are entitled to, Tommy wouldn’t meet the “QALY” index for meaningful life. To put it bluntly, Tommy’s life probably cost the taxpayer hundreds of thousands of dollars.
But was his life meaningless? Many who are rich and famous will not have so many friends who would mourn their passing and remember him.
Tommy had a meningomyelocoel, and developed hydrocephalus after the doctors removed the sac on his spine that was the unclosed backbone and underdeveloped end of his spinal cord.
As a result of this congenital problem, his legs (and bladder) were paralyzed. But like many of these children, he was only moderately retarded. But in Tommy, the commonly associated malformation of the base of his skull resulted in water not draining from the ventricles of the brain, and he developed hydrocephalus.
After awhile, his brain drainage blocked or was removed (for infection). This resulted in hydrocephalus, which is water in the ventricles of the brain pushing the brain out like a baloon and the soft still growing skull to get larger.
His parents were told he would probably die, so no further surgery was advised or done.
Now, Tommy was born in the 1950’s, when few parents could care for such a child, and like most of them, he was therefore placed in a nursing home for similar children.
His parents were under the impression that the problem was terminal, so they assumed he died and went on with their lives…until he was about age 12, when most of the nursing homes for chronically ill/retarded children were closed, and they were notified on where to place their child.
The parents were aghast: And even more aghast when they saw him, with his huge head and semi paralyzed body. They first denied it was their son, but then accepted the situation and arranged for him to be placed into a state institution for his care.
And then the horrified and guilty parents blocked him out and went on with their lives. They never came to see him, probably thinking he was a “vegetable” and it didn’t matter.
Ah, but Tommy was not a “vegetable”. He was a very nice boy, cooperative and cheerful, who could talk at a two year old level. Perhaps nowadays, with better care, he would have been able to read and write, and function at the level of a six year old: Moderately retarded and crippled, but able to participate in life, not a boy who was limited to a wheel chair and could not get around on crutches because his head was almost too large for his weak body to hold up.
In our institution, they tried to arrange further surgery, but the doctors said it would be too risky. And alas because of his medical problem, he was placed in a ward with the profoundly (infant level) retarded: Too often the moderately retarded were either in group homes by then, or had behavior problems and might hurt him.
So he was literally spoiled by the staff, who became his family.
Ironically, the main problem with children with meningomyelocoels is their bladder problem.
So as he aged, he started to develop the complications of his bladder (azotemia and kidney stones with infections) and since he didn’t move around much, every chest infection was life threatening
We watched him slowly deteriorate over the last two years of his life, and finally it came to the point that we knew he was dying, and again contacted the family for a new “do not resusitate” order: Not because Tommy was retarded, but because if his heart stopped it would be from his kidney failure or from his body too weak to breathe…and indeed he was hospitalized twice that year but pulled through.
That winter, we had an epidemic of “mycoplasm pneumonia” (often called “walking pneumonia” because it is mild). But for someone whose muscles were weak, it was serious. And so one day I was called to see Tommy, and he told me “I’m sick…hospital”…
And this time, we knew he wasn’t going to make it: His body was warn out and he no longer was fighting to stay alive. So the administration approved for the staff to take turns with him at his bedside so he wouldn’t be alone, and so he died as he lived: with his “family”, the staff who cared for him and loved him, at his bedside.
Presumably Tommy is in heaven, and when I despair that my sins are too much for forgiveness, I remember Tommy, (and the others) who I cared for, and figure he will be there to help me sneak into heaven, along with the “meek and mild Jesus” who
“loves the little children of the world
Be they yellow black or white
They are precious in his sight
Jesus loves the little children of the world.”
Nancy Reyes is a retired physician living in the rural Philippines.
A shorter version of this was posted on her blog.