Special Feature: Blair's Story

Our third and final instalment in a series of CHD patient profiles, Blair's story reminds us to always stay positive no matter the challenges we face.

I was diagnosed with a heart condition at birth and immediately referred to Netcare Christiaan Barnard Memorial Hospital for further testing. My parents told me I was not breathing properly, had blue hands and feet and was cold when I was born. As luck would have it, the very first colour ultrasound scanner had arrived in the country the week I was born. My cardiologist at Christiaan Barnard Hospital, Dr Harold Pribut, used it to diagnose my condition which he suspected to be univentricular heart disease. With his suspicions confirmed, my parents were told I needed surgery soon but that the cardiothoracic surgeon was overseas on sabbatical. Once again fate convened, and the surgeon returned to Cape Town in time to perform the lifesaving surgery I needed.

I’ve since had to have two more open heart surgeries, one when I was two and a half and another when I was five turning six. I don’t remember the first two surgeries, but I remember the third. My parents sat me down and explained that I would have to go to hospital for an operation on my heart and that’s why I have these scars on my chest. It was difficult being confronted with my mortality at such a young age but ultimately, it’s given me an appreciation for life that I wouldn’t have had otherwise. Thankfully the surgery was a success and many years passed before I would need another operation.

Then in 2016, not thinking I was unwell or needing another surgery, my cardiologist discovered I had heart block when I went for my annual check-up in June of my final year of high school (matric). Dr Pribut told me I needed to have a thoracotomy to attach pacemaker wires to the different chambers of my heart and to abdominally insert the pacemaker. For the first few weeks after surgery, I could hear the pacemaker ticking inside me whilst trying to fall asleep. It took about a year for me to not feel major discomfort when hugging someone. Having a shower and washing my hair (raising my left arm beyond a certain point) was painful and uncomfortable for ages. I also had to change sleeping positions post-surgery and be on painkillers for months, all whilst writing matric. Almost six years on and I still can’t bend all the way down on my left leg to tie the shoelaces of my left shoe because my thigh and knee push into my abdomen and pacemaker.

Compared to my previous surgeries, it took longer to heal from the pacemaker surgery because of my age but I was determined not to waste a year and am proud to say that I managed to write the mock/prelim exams with the rest of my class as normal. My classmates and friends were very supportive while I was healing and helped carry my school bag as I was unable to because of the surgery. It was an extremely difficult time but I am utterly grateful that I’m still here and appreciate all that the pacemaker has done for my body.

My condition has meant that I’ve had to adapt in some ways. From an earlier age, I made the decision to be academically and culturally inclined because I knew my athletic capabilities would always be limited. I am, however, able to be physically active within reason and took part in social sports like tennis and netball in junior school. All the teachers were aware of my condition so I would just tell them if I was feeling tired and needed to rest or stop. Now that I’m older, I always make sure I listen to my body and only do activities that are within my capabilities.

As a child I didn’t know of anyone with the same chronic condition as me; in real life or represented in the media. I desperately wanted to know of someone older than me with CHD so that I could have some indication of what my life might be like as a young adult. I have witnessed how necessary it is for child (CHD) patients and their families to see and interact with other patients their age as well as someone older. This is one of the reasons I advocate for CHD awareness.

My advice for other young people living with CHD is to get into a habit of taking your medication (meds) and make it part of your daily routine. I’ve learnt from experience that missing a few days of meds is not worth feeling unwell and it’s much better to take charge of your own wellness early on. It might be tough and seem unfair sometimes but at the end of the day everybody has their own struggle, and we all have to deal with what life throws at us. It’s what you make of your situation that matters in the end. Be grateful for your health and your body and all that it’s capable of!

14 February is a special day to show love. It's also a day to honor all of the children and adults born with a heart disease.