The Children's Heart Clinic - Our Patients' Stories

Behind every patient is a person with a voice - and a story. We often find that our own patients' stories provide the most powerful source of hope and encouragement for other children and families living with congenital heart disease. Our patients not only inspire families - they inspire each and every one of us here at Children's Heart Clinic.

Sara's Story

Most people are amazed when I tell them I weighed 2 pounds when I was born and I had my first heart surgery (coarctation repair) when I was 4 weeks old and my second (aortic valve repair) when I was 8 months old. I don't really remember any of that, but my Mom and Dad do. They've shown me pictures and told me all about my time in the hospital.

The parts I do remember are the check ups with Dr. Sutton every 6 months and the heart caths I've had in the last several years; the most recent one was in 2003. When I was little, I asked my mom when my friend was going to have her heart cath, because I thought every kid had them. I've never been embarrassed to talk about my experiences with my friends and no one has ever really said anything about the scars on my chest.

The scar that all of the kids at school have asked about is the scar on the right side of my neck where I had an IV for my first surgery. Most kids think I was bitten by a vampire and one kid thought I stuck a fork in my neck!! That's the scar that has caused me the most embarrassment and there's no way to cover it up unless I wear turtlenecks all of the time!! Mostly I don't think about it unless someone else brings it up.

This year in science class, we had to make up a constellation and write a hero story about it. My constellation was called "Corazon Roto", which means broken heart in Spanish. The story was about a tiny princess who was born with a broken heart and how the king and queen found a hero to fix her heart and saver her life (Dr. Nicoloff). I got an A on the project.

I've been lucky because my heart defect hasn't prevented me from doing things I enjoy. I love to ride my bike, shop and go to the park; I've been in dance classes since I was 5. I've learned jazz, tap, ballet and lyrical. Jazz is my favorite. I've participated in gym class with no restrictions, but I'm glad now that I'm in junior high, I don't have to take gym class. I'm in choir class instead and I love it! I would love to learn to play guitar and be a rock star someday!!