Lydia holding block numbers with the year "2023".By Lydia Schwartz

I am 17 years old, and I only have half a heart. Despite having half a heart, I excel academically, artistically, and athletically.

I have encountered setbacks and challenges in my life. However, it is the power of support and a growth mindset that have helped me become the resilient and positive person I am today. My story is one of determination and hope, both for myself and for you.

I have tricuspid stenosis and a hypoplastic right heart. In plain language, the right side of my heart is too small and doesn’t work. To fix this, I had two open heart surgeries: a bidirectional Glenn at six months old and a full Fontan at two years 10 months. Together, these procedures rerouted my circulatory system to bypass the right side of my heart and deliver the deoxygenated blood directly to my lungs. I would like to give a wholehearted thank you to my cardiologists, Dr. Sandor and Dr. Harris; my surgeon, Dr. Campbell; and the team at the Children’s Heart Centre for outstanding care.

With both operations, I got chylothorax. This is when your lymphatic system drains into your chest cavity. This is very serious, because it can result in collapsed lungs, which is exactly what happened to me when I was six months old. Additionally, I have had eight other surgeries, including a liver biopsy. I don’t remember the surgeries from when I was little, but I have the scars to prove it.

Lydia as a baby with her scar from surgery.

I have many scars. To me, scars are not a disfigurement. They tell stories. They are storylines—my storylines. Before I was born, my parents were told that I would not be able to do much, that my heart would place a limit on my abilities. My parents accepted that I might have some limitations but felt it would be important for me to find those limits myself before being limited by the possibility that they might exist. I have always been encouraged to follow my interests.

My interests include aerial silks, piano, dance, theatre, creative writing, swimming, volleyball, and both downhill and water skiing. I am a certified Canadian Ski Instructors’ Alliance Level 2 ski instructor teaching at Whistler Blackcomb. I have my Bronze Cross in swimming; I am cast in this year’s school play. I have been an active member of the Whistler Public Library’s book club for the past six years and was in Girl Guides for three years. I have studied piano since I was four and completed my Royal Conservatory of Music Level 6 exam. I have submitted art multiple times to various art shows, and I will graduate with a Dual Dogwood, having been enrolled in French immersion since grade 5.

Last summer, my family and I hiked around Mont Blanc in France. We hiked 100 kilometres in 7 days, at elevations of 9,000 feet. I am not going to pretend it was easy or that I didn’t complain. It got really difficult at high elevations, and I had to rest often.

I like to think of myself as a bumblebee. From a physics perspective, bees should not be able to fly. Their bodies are too big, and their wings are too small. It should be impossible, but somehow, they fly. Despite having half a heart, I can do way more than was expected of me.

In addition to all the previously listed pursuits, I also run an organic peanut butter business with my sister Stella. We make and sell small-batch artisan peanut butter at farmers’ markets. Growing our business from its initial tiny stall to a polished, organized, thriving, entrepreneurial endeavour (currently undergoing certification for retail expansion) has been incredible. You can find us on our website,

However, participation in these activities is not without increased risk for me. To support my heart and blood flow, I take Aspirin daily as a blood thinner. When I was 11, I crashed when I was water skiing and hit my head. I went in and out of coma, narrowly escaping brain surgery, and spent 10 days at BC Children’s Hospital (BCCH) with a brain bleed. The doctors believed that the blood thinner, while helping my congenital heart defect (CHD), worsened the brain injury.

I must be aware of the heightened risk when I am doing certain activities. I let instructors and supervisors know about my CHD and that if I am to hit my head, things can get critical quickly and to call emergency medical services sooner than they would for someone else. The first response most people have is “Well…don’t hit your head?” I usually only tell those in charge and not my peers. I don’t want to be treated differently. Experience has taught me that people often treat me like I am breakable when they find out. I am not breakable; I am capable.

I am capable, in large part, due to the support of my parents. My dad has been a great role model on how to live a life with scars. He was in a helicopter crash and has burn scars all over his face. From him, I have learned that what’s on the outside doesn’t define us on the inside. Or, in my case, what is inside me doesn’t define or limit me on the outside. I do have scars, though, and they do affect me.

The drainage tube scars have caused me the most grief. They became attached to my diaphragm and limited my breathing capacity. By the time I was 15, I could no longer take a deep breath, and they were becoming uncomfortable. This is when I went to see Dr. Gill Lauder at the pain clinic at BCCH. She uses myofascial activation and needling to release the scar tissue. Although it was painful to have my scars poked, Dr. Lauder’s technique was very effective, and it took only four sessions to restore my breathing. This is an ongoing process—earlier this year I had two maintenance appointments with Dr. Lauder.

I am also capable because of the love and support I have received from the Children’s Heart Network and Hearts of Gold. I was nine when I went to Camp Zajac for the first time. It wasn’t until I had found such a great group of heart kids that I realized how much I needed the connection with other people who were different like me, how freeing it was to be able to ask “What’s wrong with you?” and not offend anyone with the question. We were united by what set us apart. We were there to learn and share with each other, and that’s exactly what we did and continue to do. I have made lifelong friends through camp and Hearts of Gold and consider them to be an integral part of what makes me who I am today: a strong, confident, and capable person. I am very grateful for the opportunity to participate in camp, and I continue to grow from the experiences and connections offered to me through CHN and Hearts of Gold.

My job as a ski instructor just wrapped up for the season, I am about to act in my school’s theatre production, I have a painting in an art show in Whistler, and I am getting ready to sell peanut butter in the upcoming market season. I am finishing grade 12 with a top GPA, and I am looking forward to attending UBC to study applied biology, with the intention of one day becoming a veterinarian.

At the end of May, I am going to camp with the Hearts of Gold group, and I am super excited to reconnect with all of the incredible people who will be there! ♥

Lydia as a baby, lying in a hospital bed with a stuffed animal.

“Meet Lydia Schwartz” is from our summer 2023 newsletter, Heart Matters. See our Newsletters page for more stories and to subscribe.