Nicole and Katy – Interview 11

Two of Nicole’s children have been screened for the Tay Sachs gene and are carriers. It’s thought the gene was passed down through her husband’s family, although Tay Sachs has never been discussed openly in her husband’s family.

Nicole’s daughter Katy tested positively for carrying the Tay Sachs gene when she was pregnant with her first child, four years ago. Living in the United States, at the time, Katy’s husband was also tested and found not to be a carrier. The fact that he was not a carrier meant that Katy drew a line under the experience at the time and gave it little thought. She was not surprised to hear that she was a carrier because of her family history. Nicole took her middle daughter to be tested four years ago at a drop in screening in North London advertised in the Jewish Chronicle and she, too, is a carrier. Her son has not yet been tested.

Nicole describes how the gene must have passed through her husband’s family and while Tay Sachs was not discussed openly, she can remember knowing of two babies in the family who died very young. Both Katy and Nicole discuss how, with technological developments, screening for Tay Sachs is straightforward but Katy is not sure what would happen if any of her children turned out to carry the gene and were in a relationship with another carrier.

Katy doesnt think of being a Tay Sachs carrier as serious but she wants her children to get…

Age at interview 54

Gender Female

What did you think when you found out you were a carrier then? You said you weren’t surprised, but did you feel sort of

Katy’ Yes, I mean I guess I wasn’t surprised and my initial thought was just, because obviously being pregnant I was just initially, but I didn’t, because my husband, his mother is [um] converted Judiasm, so I kind of felt that our chances were slightly slimmer, because obviously he would have only been able to get the genes from one side, but then I think somebody told me that another big em… I was going to say species but that is not the right word. Another big grouping of people that have it were French Canadian. And she was French Canadian, so even though she wasn’t Jewish she came from a French Canadian background, but so my initial was just, you know, making sure he wasn’t a carrier. I mean I don’t think it’s ever bothered me. I don’t think I’ve ever felt any different knowing that I carry a gene for Tay Sachs. Please god I only have children with my husband and he’s not a carrier and that’s sort of where it stopped. So it’s never really

Nicole’ But having said that it’s an extra thing that you have to think about isn’t it? Because I mean you’re now, you’ll think to yourself, certainly I found out, I’m thinking well all right, so that all the children have got to be tested. And your children have got to be tested.

Katy’ I have to say this is the very first I have ever thought about that. And it’s true because okay, so I sort of nullified it from my end, and said okay I’ve married someone without Tay Sachs so therefore our children will not have Tay Sachs. However, if I pass the gene onto my children you have that idea of the next generation.

Nicole’ I mean it always is going to be there. I don’t know how
Katy’ I may have grandchildren you know.

Nicole’ Yes, and that’s how it’s perpetuated itself.

But I mean you’re living in quite an observant setting now?

Katy’ Hm.

So then
Katy’ But I’m not sure that it’s observant enough that my children will all have introductions to their marriages in which case againI mean I just kind of hope that through all these kind of things. I mean I don’t really know much about it, so I don’t know. I mean you can’t eradicate the gene can you? Because clearly the gene even though it’s not producing a Tay Sachs child is passed onto my children, so it will continually…

Nicole’ I mean there are the chances of it popping up again aren’t there, further down the generations? I mean presumably how it popped up all those years ago.

Do you know if any of your husband’s brothers are carriers?

Nicole’ Oh I don’tmy husband’s got one brother. The chance of it can you imagine, no. But having said that I don’t know, but I’m sure he hasn’t. I mean my husband hasn’t been tested. I mean we’re just assuming that it must come from him. And I did mention it to my sister in law but I think that they are not really part ofthey are not religious people at all. So the chances of them marrying anybody that were Jewish I would think would be fairly remote.

I don’t know whetherI don’t actually think it&

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It wasnt a complete shock to Nicole when her daughter tested positive for carrying the Tay Sachs…

Age at interview 54

Gender Female

So when you found out, when you first got tested, you were actually pregnant at that point?

Katy’ Yes. I was already pregnant.

Oh I see.

Katy’ No, I mean that would be the only reason I really found out and then from then mum decided to make sure that everybody else got tested just in case.

Nicole’ Well yes, because I think up until then, it was, as I mentioned earlier, you know, we were aware that there was a cousin and his wife had had two children that had died as infants. And I don’t even know. I think somebody might have said, Oh I think they had Tay Sachs disease but they actually weren’t sure. They did say they definitely had that.

So I suppose when you said that you were, that you had tested positive for Tay Sachs it wasn’t a complete shock, but then of course it made me start to think, well all right, if you’re a carrier, and clearly the carrier was my husband, was [name], because it’s, well yes, because it’s in his family and obviously I’m not a carrier because I’ve got three children none of whom have had Tay Sachs. And so, I remember looking at him and thinking oh my goodness’ [laughs].

And so my younger daughter, I took my younger… but here they have regular adverts in the Jewish Chronicle, and once every two or three months they have Tay Sachs screening days and you can go, when it’s normally in a, I wouldn’t say a church hall, but clearly it’s not, it’s in a hall somewhere in Golders Green. And you go and that’s run by the Tay Sachs Society. And you have blood taken there and when my daughter gave her name to the, the person that was coordinating it, she said, Well why are you here and I then discovered that these particular cousins were volunteers so they clearly, their children did have Tay Sachs Disease because they do internal audits. And then she was tested and she too was a carrier of Tay Sachs.

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Nicole & Katy talk about how the Tay Sachs gene running in the family was ‘brushed under the…

Age at interview 54

Gender Female

When you say it’s not talked about, you obviously talk about it to people?

Nicole’Yes, but I think in that generation it wasn’t, they didn’t talk about it. I think that, you know, they sort of brushed it under the carpet. I mean maybe they were frightened that nobody would want to marry into their family if they knew that there was something going on. You know, and on the other hand I mean maybe that they didn’t know the, the implications of it, you know, they could have had no idea. You know, I would actually think that they would have had, you know, no idea of the implications of it. I mean, my husband’s father came to this country in the early 1900s, and you know, probably it was from a little tiny town in, somewhere in Southern Poland and I wouldn’t have thought they would have known anything, you know, more than a little bit medical at all. You know, the town largely of Jews. But there were many Jews there. And I would think it was something that they just didn’t talk about.

Katy’ Well you wouldn’t think of it in olden days as it were. In fact in a lot of ways the screening is making it worse, because… I mean natural selection would say that if you have children with Tay Sachs then you wouldn’t have children, and then therefore that gene would die away. But now, obviously that’s not the case, because people are purposely marrying people that don’t have it

Nicole’Well no.

Katy’ So that they can pass on the gene without having… so they can pass on the gene without actually having the Tay Sachs which is actually perpetuated this, what is going to be described as faulty gene. So it’s
Sorry what sort of gene?

Katy’ it’s a faulty gene.

Oh a faulty gene, yes.

Katy’ Yes, because clearly you know, whereas now I’ve passed it on. Whereas God forbid I had not known and I had met someone with Tay Sachs then we wouldn’t have been able to have children and therefore we would have eradicated that line.

Nicole’Well you would, you would be able to, it’s only a one in four chance.

Katy’ Yes, I’m not sure I would have kept going. It takes a very brave person.

Nicole’ But [name] did and this girl that I met that had the little boy who died, she then went on to have a daughter who is perfectly alright.

Katy’ it’s very brave. I mean I’m not sure without the genetyou know, the things now, you know, the genetic
Nicole’ Screening.

Katy’ screening. I’m not sure I would be brave enough to do that. I couldn’t watch several children pass away. And then also
Nicole’ Oh no, no, no. But you’re tested when you’re first pregnant or you have some form of IVF and then they test the embryos and they only implant the ones that

Katy’ But back then when your friend and dad’s cousin

Nicole’No. Well I mean I would think that she, I don’t know.

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Katy thinks the anonymous testing system for Tay Sachs carriers is a great idea and would like…

Age at interview 54

Gender Female

Nicole’ And so my younger daughter, I took my younger… but here they have regular adverts in the Jewish Chronicle, and once every two or three months they have Tay Sachs screening days and you can go, when its normally in a, I wouldn’t say a church hall, but clearly it’s not, it’s in a hall somewhere in Golders Green. And you go and that’s run by the Tay Sachs Society. And you have blood taken there and when my daughter gave her name to the, the person that was coordinating it, she said, Well why are you here and I then discovered that these particular cousins were volunteers so they clearly, their children did have Tay Sachs Disease because they do internal audits. And then she was tested and she too was a carrier of Tay Sachs.

But I mean you’re living in quite an observant setting now?

Hm.

So then
Katy’ But I’m not sure that it’s observant enough that my children will all have introductions to their marriages in which case again I mean I just kind of hope that through all these kind of things. I mean I don’t really know much about it, so I don’t know. I mean you can’t eradicate the gene can you? Because clearly the gene even though it’s not producing a Tay Sachs child is passed onto my children, so it will continually…

Nicole’ I mean there are the chances of it popping up again aren’t there, further down the generations? I mean presumably how it popped up all those years ago.

Do you know if any of your husband’s brothers are carriers?

Nicole’ Oh I don’tmy husband’s got one brother. The chance of it can you imagine, no. But having said that I don’t know, but I’m sure he hasn’t. I mean my husband hasn’t been tested. I mean we’re just assuming that it must come from him. And I did mention it to my sister in law but I think that they are not really part ofthey are not religious people at all. So the chances of them marrying anybody that were Jewish I would think would be fairly remote.

What do you think about the system of the pre testing and the anonymity and, for arranged marriages?

Katy’ Oh I think it’s a great idea. I mean obviously in an ideal world that would be, not that introduced marriages are necessarily the way to go, but considering that that is something that happens, this is a great way of eradicating Tay Sachs children obviously, I mean, you know, sorry not that I mean, well you know what I mean. So yes, definitely, it’s a very good system. If you’ve got a system like that that’s already in place then why not use it, you know, to be able to I mean I think that’s the only thing they screen for. I’ve never heard of anything else.

No.

Katy’ No, because there are other ones that are Ashkenazi Jew based aren’t there? Is it cystic fibrosis is another one? I’ve never heard of them testing for it. Yes, I mean

Nicole’ Well presumably it’s fairly easy to test for. I mean certainly here I would think that, that the Tay Sachs Society or whatever, as they are, have set up this, its something like four or five times a year. I mean it’s well publicised on a Sunday, you know all day, and it’s free. it’s free and it’s manned entirely by volunteers, you know, who hav

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