Inherited motor neurone disease (MND)

I didn’t even think about it. I’ll be absolutely honest, it caught us by surprise, but there’s no way I wouldn’t have had her. And I guess that’s how my mum felt, and if, if someone had said to me before we met, my husband and I, that we were going to have a child, would we still want one? I honestly can’t tell you what I would have said. I honestly can’t. But having her now, there’s no way I wouldn’t have had her. So, it’s, I think it’s one of those things, that when the decision is taken away from you, then you have to live with that decision. And having to make those decisions is, well, it’s awful. I don’t know what I would have done if I’d have had that decision to make. I didn’t have it. We weren’t planning on having a baby, it just happened by surprise. And it did not enter my head not to have her at any time while I was pregnant or any time after, did it affect me.

And I remember asking my mum if she’d have known about the fact that she might inherit the disease that her mother had had, would she then have had children? And this wasn’t long before she died, and she actually did say that it wouldn’t have changed her mind because we were a blessing. But obviously, I’ve got one child now and I wouldn’t have not had her if I’d have thought that I was going to inherit the disease, because it’s a late onset in our family, reasonably late onset. And you can live quite a long life in 57, 56, whatever, years. But now, of course, if I don’t inherit, then my daughter won’t. So, it’s that what if, maybe, we just don’t know.

Because I had my son and I was very early pregnant with my daughter, I raced to get that test. I considered terminating my pregnancy, but I decided quite early on I wasn’t going to do that, because I thought, “Well, it’s done now, she’s already, you know, she’s growing and she’s forming and to take away her life would be horrendous. So regardless of whether or not I have this gene, it’s too late for it.” [Son], of course, I had no idea when I conceived him anything about it, so I didn’t have any feelings of guilt towards my son but I did carry some feelings of guilt when my daughter was born, because I’d known about this. I didn’t know my result, but I’d known that there was a possibility that I could pass this on to either of my children. And to be honest, they rushed me through the testing because they asked me initially… I basically went from referral to test and to meeting up with the genetic counsellors very quickly because they knew that I was pregnant and they weren’t sure if I would terminate. But I said quite early on, “Actually, I’m not going to terminate. I’m going to have this baby, it is what it is. If I’ve got this gene that’s it, we won’t have any more.”

So when I found out that I did have it, I did feel terrible for a while, for my daughter, because I thought - and to look at her, she’s like a carbon copy of me. She looks just like me at her age, everything. She’s got my hair colour, she’s me. I thought, “Oh my god, she’s going to have this gene,” but I have to remind myself that it is 50-50 and by the time she’s old enough to potentially get this disease, there’s probably going to be a cure for her. So I try not to be weighed down with guilt too much anymore for that, but had I known prior to having either of my children, I would definitely have gone down the IVF route and had the genes factored out.

But one of the hardest questions I’ve ever been asked, [son] was 11 and he just point blank sat - I was in the car, we were parked up - and he said, “Did you know when you had me that you were going to give me something that I was going to die of?” And I remember sitting there just frozen, thinking, “How on earth do I answer this question?” And I honestly said, “[son], I didn’t know.” And thankfully I didn’t know. At the time that I had my, I had my children I didn’t know for definite that it was. But I wouldn’t have not had them. And I had to explain to him that it didn’t make any difference, and hopefully he won’t have to develop MND, and one day the cure will - hopefully in their lifetime - I don’t think it’s going to happen in mine but I’ve got every faith that, for them, that things will be different. And that’s the one thing that I can keep telling them.

So would you, I think you said you, you would have had children anyway, even if you had known there was a family?

No. I think had I known, I would have chosen not to have children. But then that’s an easy assumption to make when you’ve already got them. So, and I wouldn’t be without them now. They keep me going. They’re a reason to be here. So I’ve got a lot to be thankful for. But I really don’t think I would have gone ahead had I known for definite that this was going to happen.

We didn’t really give much thought into starting a family. But it’s not, at the time it wasn’t something that, that was going to put me off because you know, people, like people could get hit by a bus at 20, I don’t think it should put you off having kids that might live until they’re 70 and you know, I don’t think that that should put you off. But saying that, where I’m at the minute with my health and things like that, I don’t think I want to go through that again and worry about another child getting it. So no, it didn’t at the time put me off.

I didn’t want to continue a path down a life and build a life for me that could be destroyed by motor neurone disease. I’d much rather be able to build a family and protect it potentially from motor neurone disease than not, and it was purely the fact of having children, I did not want to have children that would lose their father and then find out that they could be at risk of being, suffering from the same disease, that is just horrendous.

So, I think I decided at that point, because I didn’t know you could prevent it, I had decided at that point that I would find out if I had it, I would then not have children, and if I didn’t have it, I would just live my life normal. Then I found out that you can have this special IVF, I think it’s RIVF, and that’ll take, solve my problem. It doesn’t solve your problem because you know, you only get one child out of it and you have to pay for like the IVF for any other children and it takes a year to go through the process and things like that, but you are still able to have a family.

I think it’s a no-brainer to, if you can go through a process where you can filter, your partner and your child from being vulnerable to something that could devastate them immediately or later in life it’s, there’s no choice really. It’s a weird case of eugenics I think in how you can test a population for something and making decisions around it, but it makes sense and it, if it does one thing to stop people passing on a horrible gene and makes society better then it, I think it should be worth it really.

It definitely brought up some eugenic sort of questions in my head, but we won’t go down that road sort of thing [laughs]. It’s just a weird thing because it, it’s such a massive thing to be able to control whether someone’s born with something or not, and I think it’s just weird to think that I, as a parent, will have a 50% like decision in that, that life being born and how it’s born, it’s just weird. But it was a massive part of why I wanted to get tested and I was really grateful for knowing that those are the options because I didn’t know they were the options, and if I hadn’t gone through the counselling, I would never have known that.

I, as a mother now, I would say… I almost… and it’s quite a strong feeling that I’ve got on it. I feel that it would be totally irresponsible of me to have more children now, knowing what I know. Because I could be condemning a child to only live maybe 45 years and then die a pretty horrific death and that would be cruel. I think people should, if they’re thinking of having children, I think it’s only with hindsight that someone like me has got, which is, “God, I should have found out before I went ahead with my pregnancy with [daughter],” – sorry, my daughter. I should have found out before I had her because then I wouldn’t be feeling the guilt that I now carry, but then I would probably still feel guilty somewhat towards my son, but actually with him, I don’t think I do because I had no knowledge. I didn’t know.

For me though, personally, I already had one, almost two children at that point, and I thought, “Well, how am I going to have to…” you know, in 18 years, when I decide to just casually mention it, ‘Just pop down and get tested if you want to,’ [laughs]. I thought, “How am I going to explain to two children that they might have this gene and then tell a third one, ‘Well, it’s alright, I don’t know about you, you definitely don’t have it because I had IVF for you.’” How would that make those children feel? So I decided that once I had my daughter, that would be it and I couldn’t have any more because it wouldn’t be fair.