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Open Features: Dangerous Assumptions

...When we went in, the specialist called him Michael. That's always a problem. Of course Michael is his name but he only gets called that when he's in trouble. I agonised for a bit but thought I'd better mention it. The specialist nodded when I explained, but carried on calling him Michael. Mike hung his head...

John Kilburn’s 39-year-old son Mike is a Down’s syndrome man. John is now wondering whether medical specialists are sometimes ascribing symptoms which are indicative of something curable to Down's syndrome.

“Because of my own experience I have begun to be vigilant,’’ he says.

My son is nearly blind - and until last month I didn't know. Mike is a 38-year-old Down's syndrome man living in a community, and comes home every six weeks or so. He's been short-sighted for a long time. He likes doing simple word puzzles and has always held the book very close. Over the last couple of years it seemed to be getting even closer, so I asked the GP about it. "Oh", he said, "Downs people age more quickly than normal. You've got more short-sighted as you've grown older, haven't you? That's what's happening to Mike."

Earlier this year some of the community went on a hiking holiday to Scotland. Mike had always gone before - he didn't like the walking all that much, but all his mates went, and he never liked to miss anything. So he always volunteered. This year they wouldn't take him. "He can't see where he's putting his feet", they said, "so it'll be dangerous." This set alarm bells ringing. Although I'm well over sixty I can still see where I'm putting my feet, so I began to wonder ...

I asked the house-parents about Mike having an eye test. Luckily, his annual visit to the hospital was almost due, so I asked if I could take him. "No problem", they said. Actually, it turned out to be quite a problem. It began when I asked the sister if I could have a few words with the consultant. She would mention my request to him she said.

When we went in, the specialist called him Michael. That's always a problem. Of course Michael is his name but he only gets called that when he's in trouble. I agonised for a bit but thought I'd better mention it. The specialist nodded when I explained, but carried on calling him Michael. Mike hung his head.

On the wall was one of those eye test cards with big letters at the top and others getting smaller all the way down. "Now, Michael, I want you to put your hand over one eye and then read those letters to me please". Unfortunately, the top letter was a capital "A" and by now Mike was very eager to please, and get back in the doctor's good books. "I know my alphabet", he announced, and smartly called out "A, B, C, D, E ..."

But, of course, only the "A" was right. Whether he saw the others or not I don't know, but I'm certain that only I had realised what was actually happening. "Very good, Michael", said the specialist. He didn't ask Mike to cover the other eye. In fact he didn't ask anything else of Mike at all. Instead, he turned to me and said "You wanted to speak to me?"

Another problem! I wanted to ask what was wrong with Mike's eyes. I'd wondered about cataracts, for instance, and knew that a simple operation could probably put that right - if that was what was wrong. But no way could I mention operations while Mike was there. I temporised.

"Mike seems to be getting very short-sighted", I said. "Can anything be done?"

"He's got corneal opacification" (I think he said). "Contact lenses may help, or I can refer you to an eye-surgeon." I knew there was no way Mike could manage contact lenses, and it immediately struck me that the offer of a referral killed two birds with one stone. The new surgeon might be more understanding than this chap, and the dreaded word "operation" could be avoided. But it was not to be.

As soon as I'd intimated that I would like to see the surgeon the reply came "O.K., I'll arrange it and he will decide whether or not to operate."

Mike looked at me and I looked at Mike. We both knew now that there were more problems ahead. "I don't want an operation", he said. "Let's wait and see what the next doctor says", I replied, "we needn't decide now." But I knew that Mike had.

Fortunately, the new woman was very different. I'd taken the risk (as I saw it) of writing to her before we went to the hospital - which, incidentally, was much nearer home than the one we'd had to go to first. This helped, even if only because it meant Mike had less time to get panicky. I'd explained that he was called Mike; that he was scared of operations, and hadn't enjoyed his visit to the other hospital very much.

We got off to a bad start. A young doctor saw Mike first and said "Do you have any trouble with your vision, Mike?" This made me fed-up, because I don't think "vision" is a word Mike understands.

"Do you know what vision means?" I asked him. Maybe there was a more tactful way of making the point, but I just couldn't think of it at the time. "No", he said, and began to look anxious.

Thankfully, the doctor rescued matters, saying that it was a hard word and lots of people didn't know it. So we started again with "Can you see OK?" which led to some more tests. Luckily, the card didn't begin with "A" and Mike successfully got a bit further down - but not all that far. I learned afterwards that they wanted to find out which eye was worse, as they only operated on one at a time.

We went out and waited for a while, and then were called in to see the specialist. She was marvellous - she gave Mike all the time he needed, and answered his questions simply and honestly. Mike explained that he didn't like the needle that put him to sleep, and she explained that it might be possible not to have a needle, there were other ways. If the doctor who put him to sleep felt that a needle would have to be used, they could put something on his skin so that he wouldn't feel it. "Not the tiniest bit?", said Mike. "Not the tiniest bit." Her body language, patience and vocabulary were great, and as the consultation came to an end Mike announced that he would have the operation there and then! We explained he would have to wait a few weeks. When the time came, it was a complete success.

A few years ago, Rick, one of Mike's mates at the community, died. He was in his fifties, and had had cancer. We saw him fairly often - perhaps every six weeks or so - and he'd been to stay at our house. For the last eighteen months we had been struck by how he seemed to be deteriorating. "Oh", they said, "Down's people tend to go downhill in their fifties. Their life expectancy isn't much more." I know that that's true, of course, but I wonder if sometimes symptoms which are indicative of something curable are too easily ascribed to Down's syndrome. Because of my own experience I have begun to be vigilant. They're already saying that Down's syndrome people are prone to dementia in their thirties ...


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