My story 'The heart condition I've had since birth hasn't stopped me from living a happy life'

“PLEASE GET THE head nurse — my heart is beating really fast,” I cried out to the student nurse, terrified that I was experiencing a heart attack.

What I didn’t know was that I was experiencing heart palpitations for the very first time.

It was September 2015, and I was recovering in the Mater Hospital after spending a number of days in the high-dependency unit, having been fitted with a new pacemaker system known as the cardiac resynchronisation therapy pacemaker.

I was 20 at the time, and while my college class was starting the first week of our third year, I was instead getting used to unusual heartbeats and slowly regaining the strength to eat and walk again.

A week later, I left the hospital with a beta-blocker prescription, a couple of weeks’ worth of painkillers, and a new lease of life!

The big “CHD” diagnosis

It was a surprise to everyone, and especially the doctor who picked up the cardiac anomaly on my mother’s ultra-scan, a day prior to her due date.

Grace at six months old with a monitor.

After an emergency delivery, transfer to CHI at Crumlin, and weeks of observation, I was diagnosed with the complex and rare form of congenital heart disease (CHD) known as congenitally corrected transposition of the great arteries (ccTGA).

With ccTGA, the heart doesn’t develop correctly in the womb, resulting in the two ventricles and their attached valves being reversed. In addition, the two main arteries are also switched, so the heart is still able to function in a “corrected” way.

Grace Davitt (age 3), with her mum Lorraine Davidson, taken post-surgery after getting her first pacemaker in Crumlin Hospital.

With a regular heart, the left ventricle pumps blood to the body and the right ventricle pumps blood to the lungs. Both ventricles and their valves are anatomically designed for these functions, and they both perform these tasks well.

However, because my ventricles and valves are reversed, my stronger left ventricle and mitral valve pump blood to the lungs, while the weaker right ventricle and tricuspid valve have the harder task to pump blood to my entire body.

Since birth, I have been under constant observation. Initially, a wait-and-see approach during infancy to establish how my heart would progress, before eventually developing complete heart block resulting in me having my first pacemaker implanted at the age of three. This was followed by a battery change at 13 years and a unit upgrade when I was 20.

Life beyond limits

I am one of the lucky ones to have reached the age of 30 and have not had to undergo open heart surgery as of yet. It’s something I don’t take for granted, as I am sure my time will come.

Even with the issues I do have — complete heart block, pacemaker-dependent, tricuspid regurgitation, fatigue, daily medications and general anxiety about my health — I have been fortunate that my condition has been stable throughout my life.

This has all been thanks to the amazing treatment received from my cardiologists, CHD nurse specialists and cardiac nurses.

Read Next

Related Reads

My health story: 'They told me I had a brain tumour – I was absolutely terrified'

Patient care: Hospital staff did their best for my father but the resources aren't there

70% increase in gonorrhoea cases due to lack of condom use - and better testing

Grace and fiancé Paul at the Grand Prix in Budapest.

So far, I have been luckily able to live my life beyond the limits that CHD can present, from playing sports, attending college while working part-time, travelling around the globe, working a 9-5 job, and getting engaged. Each of these are relatively normal life events a person without CHD typically experiences but, for someone like me, it is a real privilege.

Here’s to the future

Living with CHD is very much like our heartbeat line, full of ups and downs. You can be at an all-time high in your life, with goals and plans going well, and then the reality of CHD can suddenly hit while exercising, watching a programme or reading a book. Despite being stable, CHD is, at times, hard and draining. It is never “fixed”. You are always left wondering what and when the next issue might be.

There is no doubt that it alters your outlook, both positively and, sometimes, negatively. However, it’s very important for me now that I find the right balance between the ups and downs, to find my normal, and to live as best life I can. It’s a mind-over-matter quest a lot of the time.

It’s hard to believe that it has been nearly ten years since I walked, albeit very slowly, out of the Mater Hospital with my “new” pacemaker system. As I embark on my 30s, I’m looking forward to seeing what this new decade and chapter in this life with CHD will bring.

Grace Davitt writes her story of living with CHD. February is Global Congenital Heart Disease (CHD) Awareness Month. For more information on congenital heart disease and the supports and services offered by the charity Heart Children, visit www.heartchildren.ie or telephone 01 8740990.