Dr and Mrs Koch - Interview 35
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Dr and Mrs Koch counsel people about being carriers of the Tay Sachs gene and run educational programmes in schools. After the birth of their third child, they adopted a son and describe their relationship with both sons as “wonderful”.
Dr Koch views himself as "one of the unlucky ones that the mutation occurred".
Dr Koch views himself as "one of the unlucky ones that the mutation occurred".
Well it’s one of those unlucky functions. Every time a cell divides in the human body, meiotically, not mitotic, you know, to form a sex cell. Every time that happens you have, I look at it in awe, at the complexity that that, that, that takes. It’s a massively complex thing and to me it’s in wonderment that these things don’t happen all the time, and that other things don’t happen, but they don’t. It’s amazing. So I’m just one of the unlucky ones that the, the mutation occurred and unfortunately in one of the genes that caused the problem. I don’t, I don’t have any bad feelings about it. As I say to you if I were to look at my total genome and I was able to look at every single gene in detail to see whether it was normal, abnormal or what. I think I’d be horrified at the result I would find. It’s just that some of these don’t come out. You know, I mean I’ve gone bald. I went bald at an early age. That’s a genetic function. So what? I mean it’s unfortunate.
The test Dr Koch helped develop in the 1970's has been used to identify carriers of Tay Sachs and...
The test Dr Koch helped develop in the 1970's has been used to identify carriers of Tay Sachs and...
That stopped us for a while. But in two years we’d managed to elucidate what the system was and we came up, very luckily indeed, it was a bit of luck. We came up with a diagnostic simple diagnostic procedure to test for Tay Sachs disease, for carriers of Tay Sachs disease and it turned out that could be done, and you know we could test a mother who was bearing a child from eleven weeks onwards. We could test whether the child was a Tay Sachs child. And if so, they could terminate it, at their, at their wish.
And from then onwards we no longer wanted to try for a child to be honest. And our GP and our consultant said that you’ve had enough. It was enough. It was enough for my wife I can tell you. It was a terrible period of time. The trauma was indescribable really.
We then ... I worked with [hospital name] and they had other patients and we all got together and in those days we formed known as the Tay Sachs Foundation which was a foundation to deal with similar people. It was later taken over by Jewish care, who operated then, and still operate a Tay Sachs screening programme, which screens potential people who are of Jewish origin, although that’s not, we don’t stick to Jewish if necessary, but of Jewish origin. And particularly of Ashkenazi origin, where they’re the highest risk patients. And we counsel, and my wife and I are counsellors for Tay… for Jewish Care.
We counsel and we’ve counselled many people and told them what the position can be, and how to deal with it in the best way possible. And there it stands at the moment. Really the test that we devised, my team and I devised in 1967 still remains, it’s exactly as was, with the addition of a DNA which we weren’t involved with. DNA wasn’t elucidated at that time, or certainly the test weren’t. But DNA is not as accurate in its, in its diagnosis because it depends on whether… the maximum risk is from Ashkenazi Jewish persons. And out of the biological test, the enzyme test that we devised is non specific for anyone. It will just test whether the enzyme is there or not. The DNA is different, the DNA you have to programme it to look at a particular gene to see whether that gene is, and there’s four genes involved, three particular in the Ashkenazi’s.
They’re different in different religions. They’re different in different sects and so on and nationalities, Tay Sachs disease is not specific entirely to the Jewish religion. It’s a 40% risk factor for the Jewish religion, and all else are 60% and that’s quite a lot of all elses.
The, the interesting thing is that since we ran this programme with Jewish Care, which is education to start with. We educate the Jewish community. [Name] and I we go to schools, and I give a talk for about an hour to the sixth form and uppers on the disease and what can happen, and what should be looked at. Within a week or two we then run a free screening programme at the school and we check the students out, and we… they’re told quite directly and no one else is involved except their GP, whether they’re carriers or whether they’re not.
And as a result of years of doing this
Dr Koch reflects on the "horrors and trauma" of having children with Tay Sachs.
Dr Koch reflects on the "horrors and trauma" of having children with Tay Sachs.
You know, I’ve made my, wealth as you’d like to put it and we’re giving some back to the, to the population and trying to avoid this horrible problem that we went through, because it’s, it’s, lasts your lifetime it doesn’t go away. It does. I know that. And I know my wife has still not one hundred per cent recovered from it. Neither am I. I buried myself in my work for a period of time. Tried to get through the situation and in effect I managed to do something as a result of it, but you know, it’s not easy, some people just never manage that.