Celeste

Atrial fibrillation

Congenital heart disease

“My heart broke then and there”

Celeste has coped with three septal ablations and open heart surgery. But she says her heart suffered most the day her little girl was also diagnosed with a heart condition. This is her story in her words.

Soooo… when I was 18, I started getting heart palpitations. I just thought it was lifestyle and paid no attention to it. Until one day it didn’t stop. I ended up in A&E, where the doctor hooked me up to a million wires.

He left the room for a while then came back saying I would have to go straight to Middlemore in the ambulance. Off I went, the whole time attached to the heart monitor machine which kept saying, “Please check the patient”, like a record on repeat!

Once there, they pumped me with drugs to try and bring my heart rate down (it was sitting at 220bpm). Nothing was working so they put me to sleep and zapped me with the crash cart which finally brought my heart rate down to normal.

After a couple of nights in hospital and loads of tests later they told me I had Wolff-Parkinson-White Syndrome (WPW). WPW syndrome is a condition in which there is an extra electrical pathway in the heart.

Normally, electrical signals follow a certain pathway through the heart. This helps the heart beat regularly, which prevents the heart from having extra beats or beats happening too soon. In people with WPW syndrome, some of the heart's electrical signals go down an extra pathway. This may cause a very rapid heart rate called supraventricular tachycardia.

Catheter ablation to fix WPW

The WPW syndrome could be fixed with catheter ablation. This procedure involves inserting a tube (catheter) into a vein through a small cut near the groin up to the heart area. When the tip reaches the heart, the small area that is causing the fast heart rate is destroyed using a special type of energy called radiofrequency or by freezing it.

While carrying out more tests, they also discovered I had a hole in my heart (atrial septal defect) the size of an old 20 cent piece. Apparently, I was born with it but it was never picked up as it was so small. It just grew as my heart grew.

This opened a whole new kettle of fish. This meant OPEN HEART SURGERY! I was scared. On the waiting list I went...

I had my catheter ablation on 10 September 2001, followed by open heart surgery two days later on 12 September 2001… which was 11 September 2001 US time! Did I mention my family were currently living in America?

Long road to recovery

I was off work for three months with the long road to recovery following open heart surgery. I pretty much had to learn to walk again, starting with very slow (assisted) laps around the hospital ward, which was full of old people. I was quite a novelty at a young 19 years old. 

It was two years of medication and regular check-ups before my cardiologist cleared me and took me off everything! I was stoked.

Fast forward eight years to 2009 and my second pregnancy and the palpitations started up again. So I was back on medication and close monitoring, including checks on my unborn baby’s heart.

A few months after delivering a healthy baby girl, I went back in for a second catheter ablation, which was unsuccessful. The decision was made to keep my new condition, atrial fibrillation (AF), under control with medication.

Baby girl rushed to hospital

Not long after that my healthy baby girl, Miss Ava, was rushed to Waitakere hospital with a heart rate of just under 200bpm. She was diagnosed the same day with WPW syndrome.

My heart broke then and there. The guilt flooded my every inch – no matter how many professionals comforted me with words of, “This is not your fault, it is not hereditary.”

I am literally crying while typing this, those feelings are still so raw even though it was six years ago.

Onto medication my little baby went. And we instantly became parents of a heart baby. After countless late night trips and sleepovers at Starship and Waitakere hospitals, Ava had surgery in June 2014 at three-years-old.  It was, to this day, the hardest day of our lives.

Her surgery was successful and she was cleared and discharged from the Starship cardiology ward a year later. You would never know she had been a heart baby looking at her now! She is so strong, sassy and full of life!

Medications not working

Fast forward to 2015. My meds weren’t working and I was still having a lot of breakthrough episodes of AF. The decision was made to try a more complicated version of a catheter ablation called a pulmonary vein isolation.

I was scared, again!

The procedure was done in February 2016 and was successful. I was able to come off all medication again, a few months’ post op.

However, I have since been put back on meds and am looking at another pulmonary vein isolation soon, as the AF episodes slowly started creeping back.

Family history of heart disease

There is a long line of heart history down my dad’s side of the family, with my dad also having open heart surgery for a hole in his heart at five years old. He was one of the first in New Zealand.

That’s my (extremely long) story. And this is why supporting the Heart Foundation is important to me and my family. It is, literally, a cause close to our hearts.

I am fighting a never-ending battle with heart disease. A disease which I was born with. A disease I would never wish on anyone.

We are lucky NZ has the best cardiologist in the world, and are ever evolving. It’s charities like the Heart Foundation that help fund research and specialist training for cardiologists.

They told me if they didn’t find the hole in my heart when they did I would have only lived to 25. I am forever grateful for the work these amazing people do, which put quite simply, is saving lives. 

Shared August 2017