https://www.gosh.nhs.uk/conditions-and-treatments/conditions-we-treat/inherited-cardiac-conditions-how-to-talk-to-children-about-genetics-and-genetic-testing/
Inherited cardiac conditions: How to talk to children about genetics and genetic testing
Many parents find the thought of talking to their child about an inherited heart condition difficult and distressing. You might feel a sense of guilt because they are at risk, and your first instinct might be to try and protect them by not saying anything.
This leaflet aims to help you decide when and what to tell your child. It also contains tips on how to have the conversation.
Deciding when to tell your child
Research shows that children and young people value their caregivers being honest, and that they prefer not to have secrets.
Not sharing information can result in:
- Secrets becoming a burden. Talking can be a relief and easier than secrets in the long run.
- Children finding out accidentally through overhearing conversations or from relatives.
- Children picking up information from other sources. Their imagined fears may be worse than reality.
- Children observing changes in your behaviour or feelings and feeling worried or left out.
- Worrying about things they have seen or overheard, especially if they already know that a parent is being seen by doctors for their own heart problem.
- Children raising questions at any time, leading to a rushed or unplanned conversation.
Talking to children about what is going on can help them to feel valued and respected. There is no right age to begin a discussion, but there are ways of providing information to children at different ages. Providing timely information can help a child to feel trusted and gives them some control over the situation. As a result, they are likely to feel less confused and more able to cope.
Involving children in conversations about genetic testing
If a heart condition is found to have a genetic cause, the person’s relatives may also be offered genetic testing to check for the same genetic change.
It can be helpful to involve children in this conversation and discuss genetic testing early on because:
- Children have a ‘right to know’ age-appropriate information about their own health and genetics.
- Whilst younger children may not be able to fully understand the implications of a genetic condition, giving them basic information early on gives them a foundation for later questions. Building a basic understanding from an early age, helps them to learn safely, gradually and have knowledge to build on as they get older.
- You can role-model for your child how you deal or cope with risk.
- There will be differences in the experiences of a parent who may have learnt about their heart condition later in life, or following symptoms, which may be more shocking or upsetting. When a child grows up knowing about a condition in the family, this usually becomes part of their normal.
- You can involve the support of other family members, friends and health professionals when discussing genetic testing with your child.
What should I tell my child?
You know your child best. You can predict what they will understand and can decide how to respond to their questions. We often talk about ‘drip feeding’ information as children get older, gradually giving more details when the situation arises. An initial conversation may ‘open the door’ for further discussions throughout childhood.
Here are a few ideas:
Find out what they know already. Sometimes children may be worried about something unnecessarily, for example thinking they need an operation. Therefore, for some children, giving the diagnosis can be somewhat reassuring.
Some children, especially siblings, will have pieced things together and listened hard to conversations and may know about the diagnosis already. Use age-appropriate language and give the name of the condition.
- “You have had quite a few hospital appointments recently, do you know what they have been for?”
- “We have taken your brother/sister to a few hospital appointments recently, do you remember what the doctor told us?”
- “Mum has to have her heart checked regularly/has a device in her to keep her safe, do you know why?”
“Cardiomyopathy is a problem with the heart muscle: 'cardio’ means heart, ‘myo’ means muscle and ‘pathy’ means problem.”
- “Your heart is a muscle which works like a pump, sending blood around the body. Cardiomyopathy means that the heart muscle isn’t as strong as it should be which can make it a bit harder for the heart to pump.”
- “Your heart is a muscle which works like a pump, sending blood around the body. Cardiomyopathy means that the heart muscle isn’t as strong as it should be which can make it a bit harder for the heart to pump”
- “Our hearts have a special beat like a drum, for some people the beat goes too fast or slow which is called arrhythmia, it means the heart needs some help to keep it in rhythm.”
- “In some people the rhythm takes too long between beats, and that’s called Long QT syndrome, when the timing in the heart is a bit slower than usual.”
- “Inside our bodies there is a big tube called the aorta, it carries blood from our heart to the rest of our body. For some people, the tube can be a bit softer or stretchier than usual. It is something people are born with and can run in a family, like having your mum’s eyes. The doctors keep a close eye on it with pictures and tests to make sure it stays healthy.”
General tips
- Provide small amounts of information gradually to help them adjust to the news.
- Be sensitive to when they have had enough information and give time and space to process the information.
- Emphasise positive aspects about knowing the gene change, such as having extra screening and management options, which will improve in time.
- You may also need to explain to them about procedures you may be undergoing to manage your own risk.
- Most children are quite pragmatic when they are told about a genetic risk. They are often more focused on developing friendships, school and their personal interests. To them, future health concerns can seem far in the future, so they don’t dwell on them.
What are children likely to understand about genes and inheritance?
- Very young children may find genes and genetics hard to understand, and this misunderstanding can worry them.
- You could introduce basic concepts such as age-appropriate condition information, or why they come to hospital for screening.
- You may may decide not to tell them much until they are a bit older, if you think they may be too worried or confused. We would still recommend saying something simple and general, particularly if there are going to be changes in their routine.
- “We all have instructions in our bodies called genes. Kind of like the instructions in a recipe, they help our body grow and work properly, like what colour eyes you have or if your hair is curly or straight. You get your genes from your mum and dad, like a mix of ingredients to make you.
- Sometimes there is a small change in one of these instructions. Like a spelling mistake in a recipe, it might make a cake come out a little different. Dad has a spelling mistake in one of his instructions which makes his heart a little different.”
- Children are likely to start beginning to learn about the concepts of genes, genetics, inheritance and evolution at school.
- They may have a basic understanding of inheritance and see that they share some characteristics with their parents. They may talk about genes but not fully understand what they are. They may assume that because they share some characteristics with you, that they also have the gene change. These ideas are easily confused and need clarifying throughout childhood.
- At this age, children usually cope with simple explanations in response to their questions and are not easily upset.
- “When a gene has a change which has been shown to cause a heart condition, it can be “inherited”, this means it can be passed from a parent to child, along with lots of other things which make you, you. If it has been passed down then it doesn’t mean anything is wrong with you, it just means your body works a bit differently like mum/dads.”
- At this age, young people are beginning to develop insight into inheritance and recognise that a parent having a genetic condition may also have implications for them. They usually cope well if you explain there is an equal chance of having and not having the gene change. They will be learning about genes and hereditary conditions at school. They may use books and the internet to access information.
- By this age, young people may recognise the risks to their parent, themselves and often their future children. They may start to consider genetic testing for themselves.
Communication tips
- Some children prefer to discuss things when you are driving or doing an activity together such as cooking or gardening.
- Talking about a genetic condition is an ongoing discussion rather than a one-off conversation. Expect to need to give information more than once.
- Check that you understand their questions so you can explain what they want to know. Don’t worry if you don’t know the answer. It’s okay to explain that some questions don’t have answers or to say that you will try to find out.
- Provide reassurance that they are not alone. If other family members such as cousins are going through a similar process of genetic testing, they could be encouraged to talk to each other. Recognising that siblings may have different needs and deserve an age-appropriate response.
- Explain why a parent appears anxious or upset.
- Older children may want to attend appointments or information groups with you- if you feel it is appropriate, this can encourage communication.
- Remind your child of their strengths, and of the positives of knowing information, such as having extra screening and management options.
- It is helpful to tell your child that it is okay to talk to you about this condition any time they want to. By saying this to them you are giving them permission and saying that this is not a taboo subject. Studies have found that by the age of eight children learn not to ask difficult questions unless their parents give them permission as they fear causing upset.
- Try to remember times when you’ve talked to your child about important things before and what helped them then, for example humour or honesty.
- Remember that there is no right or wrong way to tell them. Opening communication is more important than getting the words exactly right.
Support & learning
Your genetic counsellor and clinical team are here to support you. We can arrange an appointment to discuss ideas with you or introduce explanations to children with you if you are finding the idea of starting a conversation about genetics tricky.
Attending a charity support group can give a reason for regular discussion with your child, as you can talk about where you are going and why. Various charities such as Cardiomyopathy UK organise regular patient support groups, for different conditions, age groups and topics. You can find these here: Cardiomyopathy- Support Groups
The charities below also offer support for young people:
Cardiomyopathy conditions:
Inherited arrhythmia:
Aortopathy conditions:
Other cardiac charities:
There are also lots of helpful resources and videos online:
BBC Bitesize:
GOSH My Genome Sequence videos:
Contact the ICVD team
You are welcome to contact the ICVD team for support via email or telephone.
E-mail: icvd@gosh.nhs.uk
Please contact the clinical nurse specialists for clinical queries, specialist advice and support. If you wish to reschedule an appointment, arrange a referral, book patient transport or patient accommodation, please contact the team secretaries on the numbers below.
Main Hospital Telephone Number: 020 7405 9200
- Team Secretaries: extension 8839, 8017 and 4576.
- Inherited Cardiomyopathy Nurse Specialists: extension 5305
- Inherited Arrhythmia Nurse Specialists: extension 5139
- Aortopathy Nurse Specialists: extension 5124
References
Metcalfe A., et al, 2011
Patenaude AF, and Schneider KA., 2017
Ahimaz P., et al, 2021
Bowes J, NUH Clinical Genetics Service, 2015