When you have a HeartKid, you automatically become a HeartFamily. Your child’s heart condition has an impact on the way that you all live your lives. Whether that be having to attend appointments, hospital stays or ongoing monitoring – every person in the family is touched by change.
Often siblings (older or younger) are impacted by having a brother or a sister with a heart condition. If you have an older child, they may find it difficult to understand why their sibling is in hospital or why Mum or Dad need to be away during hospitalisations. They may also worry about what having a heart condition means and what will happen to their sibling when they are unwell.
Little brains can create big worries and your other child may be experiencing separation anxiety, nightmares, tantrums or find themselves pulling away from your HeartKid. If your child is experiencing these things, it might be that they need a little extra support to understand and process what is happening.
These are some ideas to help your child understand:
Be Honest
Children have an incredible capacity to read a room and the emotions of the people they love. If you are feeling stressed or anxious, they will pick up on this. They might not understand why, but they will know that something is wrong. Talking to them about it will not add to their worries but stop them coming up with their own versions (sometimes worse) of what is happening.
Pick the language you use
Using developmentally appropriate language is important when explaining things to children. Using big and complicated terms may confuse your child. Keep the explanations simple and then encourage them to ask questions. For older children, they might want more details and be curious about what everything means. Younger children may be satisfied with a simple, honest explanation which will help them put things into context.
Examples may include:
“Sarah is in hospital. Her heart is sick at the moment and the doctors and nurses are looking after her.”
“Sarah is in hospital. Her heart is not doing its job properly at the moment and the doctor and nurses need to give her some special medicine to help it get better. She is very tired and needs lots of rest.”
“Sarah is in hospital. Her heart is not very well and needs some help to make it feel better. The doctors and nurses are doing a wonderful job looking after her, but Mummy and Daddy need to go and spend time with her as well. Like when you get sick, Mummy and Daddy take extra special care of you.”
“We need to go to the hospital today for an appointment. The doctor and nurses need to check Sarah’s heart to make sure it is doing its job well.”
You can clarify your child’s understanding by asking them what they have understood after you’ve told them. It also allows you to address any misconceptions that might arise. Children can come up with all sorts of weird and wonderful ideas about the way the world works. They may take something the wrong way, so it is important that you address these early to avoid anxious thinking.
Encourage them to ask questions
Following your explanation, establish whether your child has any questions. If you can answer them, that’s great! But if you can’t, you can let them know that it is a wonderful question and that you will write it down and see if you can find an answer. It gives you some extra time to think about how you might want to explain something.
Provide reassurance
All children just need to feel emotionally safe and secure. Reassure your child that you love them and that you are there for them as well as your HeartKid. Talk about all the special people in their life that are there to support them too. If you find yourself upset in front of your child, that’s okay. They need to see that everyone has emotions. You can name it but saying something like: “Dad is feeling a bit tired and sad today. What is something that I could do make me feel better? I know, let’s go for a walk to the park.” It helps your child recognise and name emotions but also helps them to develop their own coping tool kit.
Connecting with your HeartKid
Help your child feel connected to their sibling by encouraging them to be part of the experience. If they can’t visit their sibling in hospital, have them pick a story book each day that you can read to them. They can draw pictures for their wall or write them letters. They can put together a song playlist which you can play to your HeartKid on behalf of them. They can record videos or do FaceTime calls. Asking them to choose how they would like to interact will provide a sense of control for them in this uncertain time. At home, you may like to set up special activities for them to do together – watching a movie, painting, building with Lego.
Create a social story
Social stories can be used in a variety of ways to support your child’s understanding and experience of having a sibling with a heart condition. If your HeartKid is having a hospital stay, it allows your other child to see photos of the environment so they can have a visual reference to accompany your explanation. It provides a developmentally appropriate language for them to use with others and can help them feel connected to the experience. It is amazing how much reassurance they get when they are part of the story.
Kate Strickland has a background in Occupational Therapy and Education and has been a Child Life Therapist working with infants, children and young people in the cardiac space for many years at the Royal Children’s Hospital. Seeing the gap in service provision pre and post hospital, she started the organisation Healing Hearts Beyond to provide a community-based Child Life Therapy service to support infants and children along with their families in managing the stresses associated with procedures, hospitalisations and medical trauma.
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