CHD According to Me: Open Communication Can Help Congenital Heart Defect Siblings Cope

By: Michelle Steltzer

There is no question that having a child with a congenital heart defect (CHD) can cause stress and anxiety for a family. The health and safety of that child are priorities but recognizing and getting help for the emotional needs of siblings are important, too.

Growing Up Around a CHD

I grew up with a brother who had a CHD. I didn't give it much thought when we were young because my brother, Greg, had his first heart surgery when I was only 3 months old. Plus, as we got older, he went to school and participated in activities like everybody else.

My parents also didn't talk about Greg's condition – they were afraid for his life from the day he was born. And little was known about his condition at the time.

When we were in high school, Greg needed another heart surgery. My father explained that Greg needed surgery because he had "bad plumbing." He said the surgeons were going to change his blood flow to help make him look pinker.

I wanted to be a "good" daughter when Greg had his surgery; I didn't ask questions because I was afraid that talking about it would create more stress for my parents. I also did what was expected of me to help my family cope with my brother's hospital stay. The hospital was several hundred miles away, and we weren't sure how long he would have to stay.

Information Can Help

Looking back, having more information might have relieved some of my anxiety. I was worried about my brother with nobody to talk to about it.

I had learned a little about anatomy in a ninth grade class, but I still had so many questions. Back then, there was no internet to access information to help me understand Greg's condition and what to expect.

Find Support for Siblings

Speaking from my experiences as a CHD sibling and now as a pediatric nurse practitioner, I believe there need to be better efforts to help the brothers and sisters of CHD patients.

Age-appropriate discussions can make a difference in a sibling's quality of life. Explaining things can remove some of the mystery and fear and explain why CHD sometimes seems invisible.

Too often during stressful times, it can be hard for parents to talk about their ill child. If that's the case, there are other ways to start conversations with siblings, as well as determine how they are coping:

• Find a pediatrician who asks questions about feelings related to having a sibling with a CHD. These feelings may include anxiety, guilt or loneliness. Ask for a referral to a specialist, such as a developmental psychologist or therapist, if there are concerns.
• Reach out to the cardiology clinic and talk to a cardiologist or nurse.
• Seek out a child life specialist. They help families handle the feelings associated with surgery and/or hospitalization.

Carry On Communication

Communication should never stop – not even when siblings become adults. Siblings are usually each other's first playmates and friends, and often share the longest relationship of a lifetime.

Greg received a heart transplant on National Sibling Day in 2015 at the age of 47; he died several weeks later before he was discharged from the hospital. I was lucky to have 45 years with Greg in my life, but I felt like I was alone after he died. That's why open and honest conversations with siblings about grief and loss are important to have from the beginning.

Celebrate the Efforts

Talking about CHDs doesn't have to be all doom and gloom. There are ways to have discussions that build resiliency and empathy. My brother was not expected to live beyond 2 years of age. He did and exceeded everyone's expectations. He broke boundaries and created hope for the future of CHD patients, siblings and families.

Far too often, we don't celebrate the great job parents, siblings and other family members are doing dealing with such a tough situation. Celebrating the patient's successes, as well as each CHD family member, helps everyone to feel valued. Positive reinforcement is just as important as being honest about CHD risks. It can give families the reassurance, strength and courage they need to keep moving forward and embrace the hope of achieving the best quality of life possible for all family members.

Additional sibling resources for families

• Siblings of children with chronic illness or disabilities
• Family Dynamics collection of articles on HealthyChildren.org

Consider connecting patients and families with peer supports available through the following organizations:

• ConqueringCHD
• Mended Little Hearts
• Adult Congenital Heart Association

The CHD According to Me series is an output of the Congenital Health Public Health Consortium (CHPHC); it was supported by the Centers for Disease Control and Prevention of the U.S. Department of Health and Human Services (HHS). The contents of the fact sheet are solely the responsibility of the CHPHC and do not necessarily represent the official views of, nor an endorsement by the member organizations of the CHPHC, CDC/HHS, or the U.S. Government.