Telling children about the family history of inherited MND and genetic risk

Where a biological parent carries a dominant gene variant linked to inherited MND, each of their children has a 50% chance of having inherited this gene. We spoke to people about how they approached talking to children about inherited MND. Some people only found out about inherited MND when their children were already grown up, while others knew from before their children were born. This section covers:

  • “I don’t believe in hiding things”: experiences of talking to children about inherited MND
  • “They just know”: knowing through piecing things together
  • “There’s no point in telling him now”: plans and concerns around telling
  • Seeking advice on talking to children about inherited MND

“I don’t believe in hiding things”: experiences of talking to children about inherited MND

Some people felt it was important to be “open and honest” with children about inherited MND, like Liz Z who had known about inherited MND in the family since before her daughter was born.

Liz Z has talked about illness and death with her daughter from a young age. Growing up, her daughter knew her gran had died of MND and over time Liz explained that it was in the family.

I was also going to ask you about your daughter and how you’ve kind of shared the information about MND with her?

I honestly can’t remember. I suppose when I was talking to her about my mother not being here because obviously, she died before my daughter was born, and so I explained to her that she died, and also my father had died by then as well. And the, at some point I explained to her that she had MND, and as she was older, you know, that it was in our family. We’ve always had an honest and open relationship and she’s quite mature. She’s, it’s not something we dwell on, it’s not changed our relationship at all, so I think honesty is the best option, but obviously people know their children the best and it’s how they think they will take that sort of news.

So, was it when she was quite young that you started having these conversations?

I would say probably when she was about eight or nine. My uncle who was her adopted granddad, died when she was about eight or nine, so death was a conversation. And we talked about illnesses and things. Being the daughter of a nurse is not, probably, an easy thing because we talked about all sorts of different things at home when she was small. She learnt different parts of the body by the correct biological names when she was very little, so it’s just something that we talk about. There’s not any issues that we don’t discuss, and in that way she can come to me and have those conversations too. But she knows that there’s the possibility that I might inherit the disease, that I might develop it, but it’s not something that we talk about all the time.

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Lizbeth had also known about inherited MND in her family since before having children. She says, “I don’t believe in hiding it from them because it’s what’s going on in our lives”. Her children saw their grandmother with the disease when they were young, and over time her approach has been, “almost like feeding it in, keeping it appropriate and keeping it real so that they always know”. From her personal and professional experience, Lizbeth believes that presenting information as a “da-da!” moment can be shocking and have a negative impact on children.

Other people had older or adult children when they found out about inherited MND in the family. For Hugh, sharing information on inherited MND was a “gradual process”. He kept his family up to date over his diagnosis, and later shared the possibility of it being genetic and the implications for other relatives. Maggie described a similar gradual process, although she made sure to tell both of her children at the same time so they had each other’s support.

Maggie kept her children up to date on what was happening over her brother’s diagnosis. Information on inherited MND “trickled in”, rather than being a “sit down conversation”.

The first time we actually knew that John had a problem, or saw it for ourselves, was over that Christmas and we were all here and we could all see that he was limping, or his foot wasn’t, wasn’t right and, “What’s the matter with John’s foot?” so it didn’t take very long after that for the diagnosis. The diagnosis was actually made formally three months later, but his initial diagnosis was probably only two months later. And no, the girls were in on it, right from the start really. So, I didn’t really have to sit down and say, “Oh by the way, this has happened and this and this and this and this”, it sort of trickled in really, the information and he’d had a scan and that was normal, so I said to them then, “It’s not, it’s not a trapped nerve anyway”, “So, well, what is it?” I said, “I don’t know, he’s going to see another specialist”, so then he goes and sees another specialist and then they say, “Well what did the specialist say?” and I’d say, “Well actually, it could be what Neenay had” and, you know, so then we have to wait again, and then “Okay, fine, yes it is that, it’s the same thing”, “Does that mean it’s hereditary?”, “Well yes”, “Does that mean you’ve got it?”, “No, not necessarily” [laughs]. And really it just sort of trickles through, it wasn’t a sit down, “I’ve got something to tell you” conversation.

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Angi talked to her son about the possibility that she could be at risk of developing MND after her sister and mum were diagnosed. She directed him towards relevant websites and gave him the contact details of an MND nurse. She told him, “It’s up to you if you want to look at it further”.

Talking to children about inherited MND could be hard. It was sometimes partners of people with MND who spoke to their children. Stuart “didn’t feel able” to talk to his adult sons about inherited MND, though one of them was at his diagnosis appointment so knew that it was a possibility. His wife Niki describes how talking was difficult for Stuart, “He didn’t want to hear himself say the words, ‘Obviously, it has implications for you and beyond you, to your children’…he absolutely adored them and he could not bear the thought that anything might ever harm them. So no, it had to be me”. She plans to keep open discussions around genetic testing now that Stuart has died.

After finding out that his wife had an inherited form of MND, caused by the C9orf72 gene variant, JW wrote a letter and made a copy for each of their (adult) children and his wife’s siblings. “I wanted to do it in a written way because I didn’t know how to do it face to face, frankly. It was easier to do it by writing”.

“They just know”: knowing through piecing things together

Some people didn’t really have to tell their children about inherited MND in the family, because they worked it out themselves. Sarah’s daughter was in her early 20s when Sarah was diagnosed with MND. Her daughter realised that she and her brother had a 50:50 chance of having inherited a dominant gene variant linked to inherited MND after looking up her work on genetics from her biology A level. She talked to her brother about what this could mean for him too. David’s children were also in their 20s when he developed MND. They knew that their grandmother had died of MND before they were born, as this was “part of the family story”. He described how, “as soon as I told them I had motor neurone disease it was, ‘what type do you have?’…and then it was, ‘… is it familial or sporadic?’… So, they were ahead of me in a way”.

Other people also described how their children “just knew” from seeing the disease in family members. Sheenagh’s husband was diagnosed with MND when their children were in early adulthood, though they were aware of other relatives having died of the disease previously. Sheenagh describes how “They’re intelligent children… So, I don’t actually remember having the conversation with them that this could happen to you; they just know”.

Paul didn’t have to sit his children down to talk to them about inherited MND, because they “lived it” over his mum’s illness.

So my children are older, so they’re in their mid and late 20s now, and because of their age, one is a social worker, one was studying to be a speech and language therapist at the time, they’re capable of having conversations at a professional level, and we probably all sort of revert to that. The level of feeling in it isn’t as strong. This is what I keep coming back to, potential grandchildren, should they choose to have them, might be a real game change in terms of the nature of that discussion.

And also they lived it, so we talked to them about how mum was deteriorating and likely to deteriorate, and they were with us in the last two weeks at the hospice. My dad wouldn’t leave my mum unless one of us was there, so I effectively set up a rota, or I did a lot of nights, so someone was always with my mum. And my daughter, eldest, was a part of that, so she lived it, saw it, heard it, so discussion wise it’s , it, we naturally involved them so we didn’t have a great deal, we didn’t have to sit them down and say, “This has happened”; they were living it with us because mum needed to see them. We couldn’t protect them and therefore give mum the access that she really wanted and the experience she wanted and then protect the children on the other side, be they the really young ones or the really old ones. So, they’ve seen it, and they know the risk exists, but for them it feels a very long way.

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Alison’s children knew about the possibility of inherited MND when she was diagnosed, as they were both healthcare professionals and were aware of the family history.

“There’s no point in telling him now”: plans and concerns around telling

Some parents we spoke to had very young children who were too young to understand, but they had thought about how they might share information as they got older. Harriet planned to be “open and honest” with her son; “he’ll learn about his granny and… we’ll talk about it in more detail as he gets older and his understanding gets more”. Harriet and Jade felt strongly that their children should know about options for pre-symptomatic genetic testing.

As her children grow up, Jade plans to make inherited MND “part of life”. She doesn’t feel it is worth talking to them about their own risk until they are old enough to make a decision on pre-symptomatic genetic testing.

I’m not going to keep a secret of it because if I give them that as a bombshell on their 18th birthday, then that’s going to be really hard for them to swallow. I’m going to make sure they kind of know that I have a faulty gene and it will only be after they’re sort of 18 that I mention that they might have it too, I think. Because if they see me, as they’re growing up, knowing that I’ve got it and they’re not scared of it and I make it a normal thing, you know, “Mummy’s going off to [research centre] today to do genetic research,” then I think they won’t be scared of it. Then when they’re old enough to make the decision – there’s no point me telling them they might have it until they’re over the age of 18 because then they’re going to hold on to it for years, thinking, “Oh my god, I might be like my mum but I’ve got to wait ten years before I can find out.”

So I think it will only be after they turn 18 that I say, “Right, why don’t you go and get yourselves checked? If you want to know if you’ve got it as well, you can find out. It’s worth doing because it means that you might, you know, if you want to have children when you’re older, then you’ll be able to stop the gene. And it’s also worth knowing that you haven’t got it.” So, I kind of, I will definitely make it a normal thing, not something we’re scared of, just part of life, and then it’s up to them when they’re 18.

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Robyn also saw talking about the inherited aspect as something that would happen when her son was older. She said, “there’s no point in telling him now because he’s not at any risk and there’s nothing for him really to worry about… I just want him to be a child for as long as he can be”. William felt that knowing about genetic risk would become relevant for his children as they got closer to an age of starting families themselves.

Louisa also believed it would be important for her child to know about the family history of MND when she is old enough. Although Louisa has decided not to have pre-symptomatic genetic testing at present, this could be a factor in the decision going forwards, “Do I burden her with that information, or do I get a test myself and see if I need to?”

Being better informed and prepared to talk to his children about inherited MND was a key factor in Anthony’s decision to have pre-symptomatic genetic testing; he felt that if he didn’t know whether he carried the C9orf72 gene variant, he would be in “even more of a quandary” about talking to his children. Having children of different ages made it difficult to know when to have these conversations, as he points out that it would be hard for a child not to tell their siblings. Anthony felt that his youngest child, who is four, needed to be older in order to understand.

As they reach their teenage years, Helen has started to think about talking to her children. She says, “we need to tell them and help them through it… it’s not just about us anymore, it’s about them as well”. Because it is her husband Richard’s side of the family who have been affected, Helen sees it as her responsibility to have these conversations, as he has “enough going on”. Nonetheless, she has concerns about telling them.

Helen worries about her children having upsetting memories of their grandmother with MND. She would want them to know that if they developed symptoms, the outlook would be different.

(Text edited by Helen)

I just wouldn’t want them to be like too worried, too anxious about it, you know, to think that… And I, and actually, I think when we get to a point of really spelling it out, you know, what I’d want them to know is that the future is optimistic and it’s not… even if they do have this gene, it’s not, when they get to like that age, it’s not all going to be doom and gloom, which it feels like at the moment. And, my other worry is because they’ve seen what it was like when my mother-in-law was ill, although they were very young like six years ago. So, my daughter would have been seven or eight and my son would have been like six or seven. They will have a memory of that, and it was pretty awful.

So, I think we’re, you know, we’re getting to a point of maybe talking to them about it as they’re getting a bit older and can probably handle that information along with the, you know, the knowledge now that there are trials going ahead and the outlook for them is totally, even the outlook for like my husband is probably totally different to what it was, you know.

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Helen questions whether she might take different approaches to talking to her children, who have different personalities. She also points out that not everyone deals with things in the same way- this can also apply to children who might not want to talk about it. Although Helen respects Richard’s decision not to have pre-symptomatic genetic testing at present, it has crossed her mind that if he found out that he didn’t have the gene variant, they wouldn’t have to think about these conversations.

Richard also felt worried about the possible impact of finding out about inherited MND on their children and conflicted about whether and when to have these conversations.

Richard is positive about research progress in inherited MND, which makes part of him question whether it is right to give his children the “mental burden” of knowing about the family history.

It feels we have a duty of care to get a view on what is the best conversation to have. So, is it nothing, given that sort of burden piece, the mental burden piece, especially at a younger age? I think as I sit here, I think back to where my headspace was in my twenties, would I have then, have been able to deal with it as I have had now? I’m not sure I would. So that’ll have to be a consideration. Because it is…Yeah, it is a big thing to have carrying round with you and also, you only really want to be carrying it if you have to.

I think, as well, there’s a bit – and this may be deemed irresponsible, I don’t know. But if you think about how the disease affects people, so it’s more often than not in later life. So if you think about the timeframes involved with my kids’ kids, and where the medical bit is now, there’s almost a bit of me that says, “Why burden them with it at all?”

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Although he doesn’t see any benefit to talking to his children at present, Richard feels a “responsibility” to ensure his children are informed about inherited MND before they have children. He also worries they could be upset at this information being kept from them: “morally, how long can we knowingly keep that information? At what point does it become for them to decide?”

It could be difficult to tell older children about inherited MND, even when they reached adulthood. Mary’s children were in their teens and early 20s. She didn’t want them to think about the possibility that they could be affected, which she felt could change their views on life.

Mary isn’t sure how to talk to her children about inherited MND. Although she doesn’t want to worry them, she sometimes questions if they should know.

So the, my children, I’ve not really told them or gone in-depth with anything because I’m not sure… not sure how to approach them, I’m not sure [sighs] I don’t want to worry them, I think. I don’t want them to feel like I feel, because in a way, I wish I didn’t know. If I didn’t know, then I wouldn’t worry, would I? So I try to keep them from knowing so that they don’t worry, and then hopefully nothing develops with me, and then they, they don’t have to then worry. And if for some reason it missed me and went to one of them or skipped them and went to the grandchildren or whatever, I’m hoping it would just cut the worry out for them, I think. That’s what I keep telling myself, but then in a way, I think, ‘Should they know?’ because then they have a choice if they want to have kids themselves, or… I don’t know. I don’t know what to do. I don’t even know where to go to even get advice on that because who could give you advice? I think it’s down to personal, personal choice, isn’t it? Personal option. Yeah.

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People were sometimes aware that other relatives had not shared information on inherited MND with their children, or they weren’t sure what had been passed on. Some people were accepting of their family member’s approaches and decisions, yet there were also those who felt strongly that younger generations should be told, especially where this could inform choices over having children.

Seeking advice on talking to children about inherited MND

People had different views on seeking advice around talking to children about inherited MND. Anthony would go back to his genetic counsellor for advice when the time came to talk to his children, and feels it would also be helpful to hear from others who had been in a similar situation. Whilst William planned to look on relevant websites ahead of talking to his children, Mary didn’t know where to go for advice.

Not everyone felt it would be helpful to get advice on talking to children. Robyn isn’t someone who plans these kind of conversations; she will talk to her son when she thinks the time is right. Helen didn’t feel that having guidelines would be helpful.

Helen points out that the best way to talk to one child about inherited MND wouldn’t necessarily work for another. She says, “you know your kids best”.

Because they’re so different, I think what would work for one, wouldn’t necessarily work another and I think you know your own family and kids best and you know at what level they could, of information they could cope with or the way of say-… And I think, yeah, I think for us, it will just be, we’ll do it our own way. I don’t know if reading guidelines about how to tell the kids would necessarily help me, because it would probably just make me feel like I was doing it the wrong way, anyway, rather than doing it my own way. You know, it’s not always helpful, I find, having suggested guidelines because sometimes I think that can make people feel like they should be doing something in a certain way, which is maybe against the way that they instinctively feel is the best way to do something. So it’s not always helpful.

I think what was more helpful is just knowing there’s somewhere that people can go to get more information when they’ve heard, you know, when they know, that is more useful. So it’s more useful, maybe, to like have the conversation with the kids whatever way you think is best and… but then know that there’s somewhere you can direct them to when they’re older or ready to take on more information, you know that there’s some information out there and places you can direct them to where they can get more information and, you know, start to think about their own questions and stuff.

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Hear people discuss their experiences of communicating around inherited MND in the family generally.