by Mina Shasavar

On Saturday, July 11, 1998, I entered this world in my favourite colour: bright blue. It was immediately discovered that I had a congenital heart disease.

The specific defect was later diagnosed as Ebstein’s Anomaly, a leaking of the tricuspid valve, located between the right atrium and the right ventricle of the heart.

When I was about a month old, I was rushed to hospital in an unconscious state, my heart beating at approximately 200 beats per minute. It was the beginning of electrical challenges associated with my condition. From then on until I was about 16 years old, I cycled between countless combinations of medications, hoping the next one would help my heart from racing so frequently.

In 2010, we found out about a procedure called catheterized ablation, which involves closed-heart surgery where catheters are threaded through to the heart to burn accessory pathways causing the racing.

Back then, BC Children’s Hospital did not have the advanced mapping equipment necessary for a complex case like mine, so we travelled together with my cardiologist, Dr. Sanatani, to Edmonton for my first ablation.

The procedure happened on a Monday, shortly after my 12th birthday. We returned home on Wednesday and by Friday the racing was back.

I was furious. I felt that the entire exercise had been such a waste of time, both physically and emotionally.

We resorted back to the medications and continued cycling for the next three years until I trusted Dr. Sanatani to take me back to the cath lab. This time, we were able to stay at my home hospital, BC Children’s.

The famous HOG camp pudding fight and Mina recovering from surgery.

The procedure went well and the racing held off for a few weeks. But within a month, it started again and I went back on the medications, cycling for a third time.

In 2013, I went from having one racing episode every few days to having 30 to 40 episodes in a 24-hour period, missing school regularly as a result.

The medications were clearly not effective, and so it was back to another ablation.

We returned to the cath lab in May 2014, together again with Dr. Sanatani, and the third time was a charm.

I was finally in the clear of all things electrical with my heart.

A year later, however, we were back at BC Children’s for a routine check-up when we were told that my leaky valve was allowing too much blood back into my heart and it was time to crack me open and fix it.

Open-heart surgery is always a big deal. At 17 years old, I had a very good idea of just how big a deal.

Together with Dr. Gandhi, we decided on an approximate timeline.

At the end of summer 2015, just before my senior year of high school, I underwent my first open-heart surgery. It was a complex operation and I came out of it in complete heart block, relying on an external pacemaker to keep my heart beating.

I spent a week and a half in the hospital, and some of the most difficult moments of my life are wrapped up in that stay.

Often, children with CHD undergo operations in their first years of life and so, the memories of surgery are vague, if they exist at all.

For me, I was fully aware of everything going on around me, and there was nothing I could do or say to change it.

The first few days following the surgery I had so many tubes and wires both in and on me.

Going outside was completely out of the question. At the tail end of the summer, with the beautiful sunshine coming through the window, I would have given anything to just take in a breath of fresh air.

Eventually, I won this battle and got myself outside. The machines were placed in a little shopping cart in front of me, and I felt my mood improve immediately.

Then the day finally came when Dr. Gandhi entered my room with the words, “Good morning, Sunshine!” and things finally looked up. My heart was beating normally and on its own, which meant it was time to go home.

Now, I am about to turn 20-years-old and enter my second year of university. I aspire to become a paediatric cardiac surgeon, in hopes of taking over Dr. Gandhi’s position when it comes time for him to retire.

I am forever grateful to the team at BC Children’s, most especially the Heart Centre for the lifesaving work they do on a daily basis.

In addition, the support I have received from the Children’s Heart Network and my fellow youth growing up with heart disease through the Hearts of Gold program has been unlike anything I have experienced in my life. They are an integral part of my being as alive and well as I am, and my gratitude to them extends beyond measure. ♥

“Mina’s Heart Journey” is from our summer 2018 newsletter, Heart Matters. See our Newsletters page for more stories and to subscribe.