If your child is old enough to have good communication skills, you may wonder how much information you should share with him about his congenital heart defect. As Bryan and I discovered in our journey with our son, Nathan, this can be a delicate dance. Not enough information can catch a child off-guard when tests or procedures are performed. Too much information can be unnecessarily frightening.
In our situation, surgery was far enough into the future that it seemed premature to burden him with information that could wait. Our approach was to refer to appointments with pediatric cardiologists as “check ups.” Both of us were present at these appointments so one of us was able to engage him in distracting conversations or games while the other spoke with the doctor about the particulars of his condition or the details of surgery. When we finally secured a surgery date, our instincts proved correct as the surgeon recommended we postpone talking to our five-year-old son until two weeks before the surgery. Presenting information too far in advance can potentially create unnecessary, prolonged anxiety.
Tips for speaking with your child:
Nathan takes his first walk down the hall after heart surgery to correct PAPVR, Scimitar Syndrome. His surgery was performed at C.S. Mott Children's Hospital, an excellent facility for the treatment of congenital heart defects.
- Gather your thoughts before you speak. It may help to write an outline of what you need to discuss with your child.
- Keep the conversation simple. Let them know a doctor is going to make their heart work better so they will grow strong and healthy.
- Assure them that you will be there for him/her during their hospital stay.
- Ask them if they have any favorite toys, books, or DVDs they wish to bring.
- Books such as Franklin Goes to the Hospital can be great tools for introducing unfamiliar hospital practices to your child.
When your child transitions into the teen years, it is important to explain in more detail the type of congenital heart defect he/she has, how it has been managed, and what kind of treatment may be necessary in the future. According to the National Heart, Lung, and Blood Institute, this kind of frank discussion will help your teen to begin taking responsibility for his or her health and “ensure a smooth transition from care by a pediatric cardiologist to care by an adult cardiologist.”
Nathan enjoys a little father and son bonding.
Remember that childhood surgery is not a “cure” for a congenital heart defect. Make sure your teen understands the importance of followup care throughout adulthood to maintain good health.
Tags: congenital heart defect, Nathan, PAPVR, Scimitar Syndrome
