Riley and Hunter in the hospital

By Riley Matthews

I was diagnosed with severe aortic valve stenosis when I was less than 24 hours old. My parents knew then they were in for a tough journey ahead. When I was two days old, I had my first surgery, a balloon dilation procedure, which opened up my aortic valve.

I have, over the past few months, been learning about all these details—the surgeries I have had, the names of the medications I have taken, and what I need to know to ensure my heart stays healthy.

As I turned 18, I came to the realization that I, not my mom, must be the one to explain my condition to the doctors. I must now be my own advocate for my health. I know my parents will always be by my side, but I need my own plan that provides me with the knowledge about my heart journey so that I can be independent in my future health.

I discovered that after that first procedure, my parents had to persist with feeding me and I was only able to slowly gain some weight. By the time I was four and a half months old, I weighed 11 pounds, but I was showing signs of congestive heart failure.

The initial balloon dilation had helped me grow a bit stronger and prepared my body for my first open-heart surgery. This time, my aortic valve was replaced with a human donated valve. It was a success and I started getting back to a more “normal” life with my twin sister and my loving parents. I started crawling at seven months old and was on my feet at 10 months of age. I began to gain weight and my parents said I was a pretty much a typical little infant and toddler.

My life also consisted of regular visits to the Heart Centre where they monitored my growing heart. At three years old, I had just started preschool and had become one very active little girl. However, my donated valve started to leak. This is when my fantastic cardiologist, Dr. Hosking, recommended that it was time for my next surgery: the Ross procedure. This replaced my aortic valve with my own pulmonary valve and then replaced my pulmonary valve with a human donated valve. The brilliance of this surgery is that it allowed my “new” aortic valve to grow with my body (as it is my own valve) and then, in the future, I will only need my pulmonary valve replaced.

After only five days post-op, I was riding a tricycle up and down the hospital halls and goofing around with my sister in the playroom even though my hair was heavily matted! I guess no one told my mom to tie it up before the surgery.

I settled back into life at home with my family and did hospital check-ups every six months. As I got older, I started doing many of the activities that any other ordinary kid would do. I did ballet, gymnastics, and Girl Guides, and even learned how to ski when I was seven.

Throughout the years, I have played competitive soccer for my community gold team and my school, learned to play the trumpet, and met many new friends. I love the life I have been given and now I know that my heart journey is only a small part of the so many great things that make up my life.

That said, the heart is a pretty important organ and I cannot ignore the journey I have travelled. I was very young when I went through my major surgeries and I am forever grateful to Dr. Hosking, my surgeon, Dr. LeBlanc, and the whole Heart Centre team, whose work has allowed me to have the life I have today. However, to be honest, I never really paid much attention to what exactly was wrong with my heart.

Now that I am 18 and must move on to the adult world, my health is in my own hands and I am learning more about what I need to do to take care of my “special heart.”

The Children’s Heart Centre has been there to guide me through this transition, providing information about youth transition and planning for adult care. At first, it was scary and I hardly knew where to start. I asked one of my nurses questions about my own personal health. What should I look out for in the future? At each check-up, I discovered that I had more questions and the nurses were there to answer them. They even answered questions that I didn’t know I needed to ask.

I am aware that my health can change at any point. There is still the unknown of if or when I will need another surgery. This thought is always in the back of my mind. But, I don’t let it overwhelm me.

I have learned that transitions are not a finite thing—they too are a journey. So, I am taking this journey one step at a time. The first step in my transition plan is to find my own voice and advocate for my own health care needs. I think it is a step in the right direction. ♥

Riley and Hunter, 4 months old
Riley and Hunter, four months old.

Riley and Hunter, 18 years old
Riley and Hunter, 18 years old.

“Riley’s Heart Journey” is from our summer 2021 newsletter, Heart Matters. See our Newsletters page for more stories and to subscribe.