Preparing Your Child for the Fontan
Sherry Polise, CCLS
Child Life Specialist III
The Cardiac Center
The Children’s Hospital of Philadelphia
Helping Your Child Prepare for their Fontan Surgery
The Fontan Surgery is stressful and overwhelming for parents for many reasons, but one of the most difficult aspects is because of your child’s age. Most children entering into this procedure are between 2 and 5 years old so they are just beginning to understand their body and how it works, but they are also extremely limited in the amount of complex information they can process. Parents often feel overwhelmed at the thought of talking to their 3-year-old about open heart surgery when they themselves get confused and worried when thinking about the topic. For these kids there are still plenty of things you can do before surgery that can help your child feel comfortable, have a better understanding of what is happening, and help set the stage for the most positive experience possible while at the hospital.
Before surgery, there are many things you can do to help support your child’s understanding of what is to come.
Be honest and talk about what’s happening: First and foremost, it is important to be honest - even with young children - about what is happening while using age-appropriate language. A simple way of explaining heart surgery to a child even as young as 2 or 3 might be “remember when we went to the doctor and took the special pictures of your heart? He saw a little boo-boo that needs be fixed and that’s called surgery”. There are some 3 year olds who might hear that and ask a ton of questions right away and some who might look puzzled and immediately want to go back to playing. This range of reactions is okay and normal; the most important thing is that you are using consistent, honest, and age-appropriate language so that your child feels empowered to ask questions if they have them.
Use simple concrete language: Kids at this age can have wild imaginations; sometimes that imagination can help them have a lot of fun, but it can also make them envision really scary things too. When taking about the hospital, try to avoid analogies and metaphors like “having a zipper” or “fixing your engine” as these can evoke confusing and scary imagery for young children. Using familiar terms like “boo-boo” or “owie” helps your child understand what you are talking about without letting their imaginations run wild.
Be aware of timing: One common question that parents often ask is “when is the right time to tell my child about surgery?” For most children in this age range, we recommend telling them no more than 1 to 3 days prior to the procedure. This allows time for them to ask questions and process the information but not too much time to sit and worry about it or even forget the information completely.
Ask to speak with a child life specialist: All pediatric hospitals employ child life specialists who are trained to help explain medical procedures to children of all ages. You can ask to speak to one about how best to meet your child’s needs. Often a child life specialist can use a doll or book to help prepare your child for the hospital and the things they will see on their body after surgery. Often times, they can arrange a pre-op tour with you and your child to give them an opportunity to see the hospital and ask any questions beforehand.
Focus on some of the positive aspects of the hospital: It is important to tell your child the truth about things that are happening but make sure you emphasize the positive and the things that are important to them. Remind that them you will be with them at the hospital and that there are toys, books, and movies at the hospital too. Most children’s hospitals have a playroom as well. These things are comforting and reassuring to young children.
Read and engage: Another thing you can do prior to surgery and just in general is to incorporate story books about the hospital or going to the doctor into your normal reading routine. Reading about your child’s favorite character going for a check-up or visiting the hospital can help normalize these things for them and provide an opportunity for dialogue about these experiences.
Use medical play: For children at this age, they are also learning about and processing their world through play. Medical play can be extremely helpful for children in giving them an opportunity to “be the doctor” instead of the patient. You can help your child by providing them a play doctor’s kit and a doll and simply being there as a reflective listener during the play. You can also listen to your child while they are being the doctor and clear up any misconceptions you overhear.
Help them to take charge: You can also help your child prepare for surgery by helping them have some control over the situation. As you well know as the parent of a preschooler, a sense of independence and control is very important for them. You can foster that sense of independence by allowing your child to help pack their bag for the hospital and allowing them to include the things that are important to them (i.e. a favorite DVD, favorite sippy cup, pajamas, etc.). Siblings can help too!
It is okay to not know: If your child asks you something about the hospital that you don’t know or aren’t sure how to answer in a way that isn’t too scary, you can be honest and say “that’s a great question, I’m not sure but let’s write it down and we can ask when we go to the hospital”. This can give you an opportunity to think about your response but also assures your child that you will get them the answer.
Thank you Sherry for sharing your insights and advice on preparing for the Fontan! We are truly grateful for your expertise.