Experience Journal: Growing up with congenital heart disease

my heart sounds like a washing machineOne in 100 babies is born with some form of congenital heart defect (CHD).  Sometimes the issue is minor and doesn’t cause serious problems. Other times, the heart can’t function properly and needs immediate, invasive surgery. As kids with CHD grow up, they learn their condition will follow them for life and need continued attention. Every CHD heart is unique, but some experiences are universal, and kids and families can help support one another through challenging times.

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The Heart Experience Journal, created by the Department of Psychiatry and the Heart Center, represents the “collective wisdom” of patients and families coping with pediatric heart disease. The following excerpts were taken from conversations with patients and families during their child’s inpatient stay for a heart-related issue. Read more first-hand advice from families at the Experience Journals.

Conversations with kids

19-year-old boy with congenital heart disease

Strength in heart is better than strength in movement. The doctor says its weak, but I say it’s strong. Why? Because I can love. I can care. I can feel. That’s not a sign of weakness, it’s a sign of life. A sign that my disadvantage is a blessing, only to make me see that everything cannot go my way. To make me more aware of this hard but beautiful world I live in.

8-year-old girl talking to a Child Life Specialist prior to an operation

My heart sounds like a washing machine because it has three holes in it. My friends say it sounds like that. My heart sounds different.

10-year-old boy after being in the hospital for two weeks

“Every time the doctor comes in he says, “Good, Good, Good.” But I don’t know if I’m getting better or worse.”

17-year-old girl talking about her atrial septal defect (ASD)

I was born with a congenital heart defect. It sounds scary, but it basically means that my heart just wasn’t formed correctly when it was time for me to be born. Some babies are born with different heart defects that cause problems right away. My problem took a little longer to be noticed. Simply, I had hole in my heart, and the hole was making my heart work harder. Unless my heart got fixed, I would never be able to grow up to be healthy and strong. When I was four and a half years old, it was time to fix my heart.

Speaking with parents

Mother of Ryan

Ryan has always been my HERO. I admire his courage. I envy his ability to cope. I am proud of his ability to live his life to its fullest. I am thankful he has shared his life with me. The doctors, nurses and support staff at the hospital have made it possible for us to continue to enjoy life with this wonderful little person.

Mother of Derek

This will be Derek’s fourth open-heart surgery. We are almost too calm. Having been through 15 procedures and knowing this is not the last just makes you feel very humble. Life is very precious and each day with him is a true blessing. He is very brave and very active. He shows no signs whatsoever of a heart and lung problem, he is facing this surgery this morning without any signs of being frightened. The best advice I can give anyone is to let their child do what they feel they can do. They will let you know when they are tired or need a break, you needn’t tell them anything their own bodies are telling them anyway. Derek is 7 now.

A parent

There just seems to be so much information coming at you so fast, and you think you can’t cope. You end up doing far better than you imagined. You are surprised you can do so much. The stress, I thought, was the thing that would be bad, and it was.

Mother of Jared

Don’t give up hope, love your child, and treat him or her as if there were nothing wrong with them. Let them do whatever they want to if it is physically possible for them to do so. Jared plays on the golf team and lacrosse team at school. We’ve been in your shoes, and all we can say is be positive, and believe in the doctors; they can be miracle workers.

Grandparents’ Experiences

Excerpt from a grandma’s diary

Operation Day: You were in surgery about five to six hours. Dr. del Nido told us that everything went as expected and that we could see you later that night. You were sleeping soundly in what looked like spaghetti junction. Tubes and wires were everywhere. You were completely out and would be for several days. Your chest was open (not stitched up) and the incision was covered with what appeared to us to be orange Saran Wrap. We could see the pulse beat of your beautiful little heart through it.

The Experience Journals Team is currently speaking with patients, families, and clinicians to update the stories featured on the website. If you or a loved one is interested in sharing your family’s experience with pediatric heart disease, please contact us at ej@childrens.harvard.edu or call 857-218-3754 to learn more.

Learn more about the Heart Center.