Understanding Anxiety in Children with CHD

Anxiety does not always look like fear or panic. Sometimes it looks like irritability, avoidance, physical complaints, or even silence. When parents slow down, notice patterns, and get curious about what their child may be feeling underneath their behavior, it opens the door to deeper understanding and more effective support. Rather than asking only “How do I make this stop?”, it can be powerful to also ask, “What might my child be trying to tell me?”

A growing number of research studies show us that children and teens with CHD are more likely to experience anxiety (and depression) than those without a heart condition. Even children with milder heart defects have a significant risk for anxiety, and this grows with more complex conditions and surgeries. These studies often focus on generalized anxiety or worry. A child with CHD can also show specific types of anxiety.

Separation Anxiety

Separation anxiety tends to be most common in young children but can persist into later development. Children with chronic medical conditions, including CHD, can experience heightened anxiety related to separation from caregivers, such as when they face hospitalizations and medical procedures that may separate them from parents temporarily. The emotional distress associated with hospital visits and medical treatments can amplify fears of separation too. A child’s anxiety around parent separation can generalize to other settings outside the hospital, such as school or even inside the home (e.g., leaving the child to go to another room, or leaving the house to run errands).

Health Anxiety

One type of anxiety that commonly occurs in CHD is health anxiety—an excessive worry about health and medical care. Children (and adults) with CHD often worry more about their health compared to their peers. They may become very sensitive to physical symptoms or uncertainties related to health, and exhibit more somatic or physical complaints (e.g., headaches, stomachaches). Some may learn to ignore these signals from their physical body because it triggers fear or anxiety. Others might avoid certain activities (e.g., physical exertion, exposure to germs/illness) because they worry about what may happen.

Specific Medical Fears

Some children with CHD experience specific fears of medical procedures or equipment (e.g., needles, latex gloves, sticky things, cardiac imaging, etc). It's important to recognize that medical procedures, though essential, can sometimes be experienced as traumatic. Have you ever had to restrain your child during a procedure because they were so afraid? Have you had to schedule routine procedures under general anesthesia because they couldn’t otherwise be completed? It’s crucial for parents of children with extreme fears to work very closely with their team to reduce these fears and help your child tolerate when medical care is necessary. Psychologists and therapists can help.

Parental Role in Child Anxiety

We also know from extensive research that family members of children with CHD experience significant anxiety, especially at high stress periods of medical care or hospitalization. This anxiety is normal and expected. When parental anxiety is really high or it continues for long periods of time, it’s not surprising that it affects how a parent supports their child. Have you ever noticed how sensitive your child is to your mood or anxiety? They can feel what you feel.

Parents have a powerful role in their child’s ability to tolerate and cope with anxiety. How you talk with your child or teen with CHD about their worry or fear is critical.

There are 2 key ingredients when supporting your child.

1. Validate and normalize how they feel.

2. Remind them how much you believe in them, that they are strong and brave, and they can handle their feelings. Their worry or fears don’t need to stop them from doing what matters!

Parents are essential to how their child grows in their independence. Anxiety can be a huge obstacle. Do you ever notice that you allow your child to avoid things due to anxiety or overwhelm? Do you do too many things for them? This works just fine in the short term, but it can really impact their functional capabilities as they grow older. Step by step, find ways to slowly increase expectations that age typical. Ultimately, try to provide just the right amount of support, but not too much.

It can be painful for parents to allow your child to feel emotional distress. It makes sense that parents of children with CHD want to protect their child and help them avoid worry or fear. But we know that protecting someone from worry or fear can contribute to a low distress tolerance.

Your child with CHD is a heart hero. They have already shown INCREDIBLE BRAVERY and RESILIENCY.

Watch the FREE video entitled Introduction to Anxiety in Congenital Heart Disease.

Also watch for other video sessions about how to support fear and anxiety.