Having children in families affected by inherited MND: past experiences and future plans

This section focuses on people’s choices around having children in families affected by inherited MND, including:

  • Reflecting on previous experiences and decisions whether to have children
  • Reflecting on future plans around having children

People in this section talk about options for starting a family, including having children the usual way, not having children, adoption and fostering, and genetic testing before or during pregnancy (pre-implantation genetic testing, testing before pregnancy with embryo selection followed by in vitro fertilization, and pre-natal testing, testing an embryo during pregnancy). Find out more about genetic testing and pregnancy, including people’s views and experiences.

Reflecting on previous experiences and decisions whether to have children

People shared a range of experiences of having children or not in families affected by inherited MND. Some people didn’t have to make a decision, like Liz Z who got pregnant unexpectedly. She was glad she didn’t have to make an active choice either way, because “having to make those decisions is, well, it’s awful”.

Although she didn’t plan her pregnancy, Liz Z never considered not having her daughter. It was important to hear that her mum would still have had her if she had known she would develop 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.

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Louisa and her partner only ever planned to have one child, who was born before she found out about inherited MND in the family. She sometimes thinks about how much time she has before she could develop symptoms and wishes she’d started a family earlier. Whilst she feels sorry that her child could be affected, she also feels sorry for others having to make difficult decisions around having children after finding out about inherited MND in the family.

Like Louisa, other people also had children before finding out about inherited MND in the family, or when less was known about it. Whilst these individuals often recognised that there was nothing they could have done differently, for Jade finding out during her pregnancy has raised some difficult feelings. Since having her daughter, she has received the results of her pre-symptomatic genetic test and been told that she carries the C9orf72 gene variant.

Jade was pregnant with her second child when she found out about inherited MND in her family. She decided to continue the pregnancy but has since struggled with feelings of guilt.

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.

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Some of the people we spoke to were positive about options to avoid passing on gene variants linked to inherited MND to future generations. Like Jade, they felt they might have considered genetic testing before or during pregnancy if they had had these possibilities. A few people we spoke to said that if they had known what they know now, they would have thought more about starting a family or would have decided against having children.

Liz X has explained to her children that she didn’t know about inherited MND in the family before she had them. If they do develop symptoms, she feels hopeful that the outlook for them will be more positive.

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.

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Liz Y had already been diagnosed with MND before she and her husband had thought about having children. Her father had tested negative for the SOD1 genetic variant, which at the time was the only known gene linked to inherited MND, but the family could see there was some kind of inherited form despite this result. Liz would have worried about passing on a gene variant linked to inherited MND. She said, “within the family we’re all very keen to kind of stamp out the gene”. Other people we spoke to had also not had children, whether through choice or not, but said this was unrelated to MND.

Whilst some individuals felt strongly about preventing the disease in future generations, not everyone felt the same. Paul hadn’t known about MND in the family when he’d had children, but even if he had, he didn’t think it would have affected his decision. He said, “MND is such a way in front of a baby that even then I’m not sure we’d have thought about being tested because I’ve seen medical science progress over the last ten years and I’m sure it’ll progress even further”.

Other people we spoke to explained that their decisions around having children were not really affected by their family history. People highlighted that children would not necessarily inherit the genetic variant or develop symptoms if they did. They imaged that if their children were affected it would likely be in later life, and they hoped that there might be a treatment or cure by then.

When Robyn had her first child, MND “wasn’t something that was going to put me off”. She points out that anything can happen in life, and that people can live a long life before developing symptoms.

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.

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A few people considered the possibility that they could develop MND before they had children, but decided to have children anyway. Lizbeth grew up being told by her mum that she shouldn’t have children in order to stop the disease in the family – at the time there were no genetic testing or reproductive options available. She felt resentful and angry, but after moving away decided that “I’ve got to live my life for me” and started a family. Although her mum’s reaction wasn’t supportive at the time, she had a very close relationship with her grandchildren.

William talked to his partner about genetic testing before they started a family, and they decided not to look into this further.

William talked to his wife about inherited MND before they had children. He wonders if he should have pushed it a bit more, as he feels that her understanding of the disease was limited.

I think from memory I would just have said, just raised the issue of, “Is this something we should look into if we’re thinking about having a family?” and I suppose the concerns would have been that it might be something that affects the kids. And we just kind of didn’t at that stage and felt it was okay, and we just sort of went forward with things. We didn’t go into any sort of testing or counselling or formal information or thinking about any process there. Probably a lot of that comes down to gut feeling and how it’s, yeah… I’m slightly doubtful how much my wife, how much insight she’s got into what MND does to you and that kind of thing, really, but at the same time, she does know. She probably, she knows definitely on one level, anyway.
 
I slightly wonder if I should have just pushed it a bit more with her, to be honest with you. It’s hard to know because she’s not lived through that, she’s not really seen people with motor neurone disease, you know? It’s a bit different hearing about it than it is actually seeing it, you know what I mean?

 

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Helen pointed out that her children would be in a different situation to herself and her husband when considering starting families of their own, “what will be different for them that we didn’t experience, was the knowledge of it and the way it might affect the choices they might make about having kids, the way they would go about having kids…. When we’d got married and had kids… it didn’t even cross our mind”.

Reflecting on future plans around having children

People we spoke to discussed a range of plans around having children in the future. Georgia Y hadn’t yet thought about it in detail but felt uncomfortable with the idea of using genetic testing before or during pregnancy, which she saw as “playing God”. She said, “it could just get out of hand, couldn’t it? You could…test for everything and you could try and eradicate all illnesses, but ultimately you don’t know what could happen”.

For some people we spoke to, informing future reproductive choices was a key factor in their decision to have pre-symptomatic genetic testing because they were concerned about passing on a genetic variant associated with inherited MND.

Calum feels grateful to have learnt about reproductive options to prevent his future children from going through what he has gone through. He sees stopping the disease as a “no brainer”.

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.

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Calum has considered the financial and practical implications of pre-implantation genetic testing (PGT) and has thought about putting some money aside. Knowing he carries the C9orf72 gene variant has also made Calum feel a time pressure to have children because he is aware that he has an increased chance of developing symptoms. He said, “I do not want to have children later in life and leave them at 16 or 17 without a father. It was horrendous for me at 24… to have kids lose their father at that age would be horrific for them…I kind of feel like a bit more rushed”.

When Kelly was going through genetic counselling before her pre-symptomatic genetic test, she started to put plans in place to pursue PGT if she received a positive result; she felt that having a child otherwise would have been “taking a very big gamble”. Georgia Z had considered using PGT but knew that this could be a difficult process. She said, “from hearing my cousin’s experience, it’s a very expensive treatment and not always successful, so I guess that is quite scary. But then there’s also the possibility if I was positive that I would be essentially passing that down, which I don’t think is fair. But then there was also that possibility that it might not go. So, you’re a bit in limbo really until you know”. Kirsty had planned to explore all the possibilities for starting a family if she did carry the C9orf72 genetic variant.

Kirsty found out about reproductive options to prevent inherited MND in future generations through her mum’s genetic counselling. Whilst this was good to know, it was a lot to take in.

Then when my mum went for her, she had her first genetic counselling session before being tested. That was actually, that was quite helpful, that was really helpful not just, I think it was for her, but it was also for me as well because they talked about me and about my sister and about, you know, having children and testing possibilities and all that sort of stuff. And my mum, she you know, she relayed the contents of like the whole conversation to me.

You know, so it came, this lady sort of said that if, for example, if my mum tested positive for the gene and then if I were to fall pregnant before I knew if I had it, then there would be the option for like fast tracking the testing process to find out. And that there was, there are also then possibilities to do like embryonic testing and then potentially also like to do IVF as well, as like a different route to having children.

So it was, on the one hand it was, it was good to know that there were all of these sort of options out there so that, you know, if it turned out that my mum had the gene and I had the gene that it wasn’t that having children was sort of off the cards. At the same time, it was all quite heavy-duty stuff to try and get your head around. And yeah, it’s quite, it’s just, it is just quite a lot to sort of, to take on.

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Having found out through pre-symptomatic genetic testing that they do not carry the gene variant identified in the family, Kelly, Kirsty and Georgia Z felt relieved and grateful that they would be able to try for a family without having to worry, when the time was right. Kelly would be open to fostering and adoption.

Kelly and her husband have always talked about adoption and fostering. They would still consider these options since finding out she does not carry the C9orf72 gene variant.

Me and my husband are quite fortunate, his family do a lot with fostering and adoption, so that was always something we’ve always spoken about. We, we’d always be open to fostering children or looking at adoption.

Then with the IVF side of it, to be honest, I had thought about it and you know, if it came to it I was, we were both willing to go through the IVF route. You know even if we only got the one chance on it, you know, just one chance, we’d have our child and then, you know, there’s still other doors available to us if we wanted to adopt or, you know, anything in the future. We, we were quite open to working with whatever route kind of would be available to us.

We are just extremely lucky that we get to go ahead with our future the way we wanted to. We, we will still be looking at, you know, adopting or fostering in the future as well as having our own kids. 

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For some of the people we spoke to, inherited MND was a factor in deciding not to have more children. Since having her first child, Robyn has lost her dad to MND, and become more worried about the possibility of developing the disease herself. At the time of the interview, the family history of inherited MND was one of many factors in her choice not to expand her family. Struggling with health anxiety, she didn’t want to worry about another child. She said, “the way I look at it, the more children you have the bigger the risk that one of them is going to get it”. (It is important to note that each child has the same chance of inheriting a gene variant associated with inherited MND, however many siblings they have).

Knowing that she carries the C9orf72 gene variant, Jade’s decision not to expand her family is based on concerns around a future child being affected, but also the feelings of her existing children.

Since finding out about inherited MND in her family, Jade has decided not to have more children. She doesn’t want to pass on the gene, but pre-implantation genetic testing doesn’t feel right for her.

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.

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For other people, the decision not to have (more) children was not due to MND. Joe didn’t want children but if he did, he wouldn’t be concerned about the possibility of them inheriting a gene variant linked to inherited MND.

Harriet has been through two rounds of PGT, which were unsuccessful, and she and her husband have since decided to try for a baby on their own.