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.

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.

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.

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.

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.

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”.

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.

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.

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.

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.