Article from 2021/2022 Impact of Giving Annual Report
Four year old Michael loves superheroes. Any chance he’s given, he’ll put on one of his many costumes. But for mum Karlie, Michael doesn’t need to don a disguise – her little boy is a real life superhero, having battled a rare congenital heart condition his whole life.
Karlie and her husband Kriss were overjoyed when they fell pregnant with Michael, their second baby, in 2017.
However, at their 20 week scan, their joy turned to fear as they were told their child had a rare congenital heart defect called Ebstein anomaly, a serious condition that affects one of the four valves in the heart, the tricuspid valve.
When he was 17 days old, Michael had his first episode of supraventricular tachycardia (SVT), which is an irregularly fast heartbeat. During an episode of SVT, the heart beats between 180 to 240 times per minute – more than double a regular heartbeat.
“That first episode was terrifying. We took him straight to the RCH where our cardiologist diagnosed him with Wolff- Parkinson-White syndrome (WPW), a condition arising from his initial diagnosis of Ebstein anomaly. People with WPW, like Michael, have abnormal or extra electrical pathways in their heart, which can cause episodes of SVT,” said Karlie.
Michael spent the next week at the RCH, where they started him on medication to stop the SVT from occurring. Over the next year, the family were in and out of hospital almost every month, while clinicians adjusted Michael’s medication and dosage.
“We spent nights just listening to his heart beating and hoping the medication would work and the episodes would stop. Thankfully, just after Michael’s first birthday, they did. For a while, it was like we had a normal child again,” she added.
Unfortunately, the family’s relief was short lived. In October 2021, when Michael was three and a half years old, his heart started beating irregularly again.
In February 2022, after another five months of back and forth from the hospital, Professor Andrew Davis, Clinical Lead, Arrhythmia Service at the RCH, called Karlie.
Andrew recommended a procedure called an electrophysiology (EP) study, which would be done by Associate Professor Andreas Pflaumer, the Clinical Lead Invasive Electrophysiology.
Michael’s first EP study was done in early March 2022, to explore the possibility of an ablation, which is a risky procedure given the combination of a small child with congenital heart disease.
During the procedure, Andreas discovered that there was more than one extra electrical pathway in Michael’s heart. They used ablation, a procedure that uses small burns or freezing to cause scarring on the inside of the heart, to block the additional pathway.
Unfortunately, post procedure, Michael’s ECG was still showing signs of extra pathways and 9 days later, he had another episode of SVT. Then, three weeks later, he had another.
“It was a lot. When his heart is in SVT, it is like the equivalent of an adult doing a HIIT workout for 15 hours. He was exhausted, pale, sweaty, and he was sick from the medication. Imagine that for 12 hours. It was just awful,” said Karlie.
A few weeks later, and after another episode of SVT, Michael underwent another EP study, and another attempt at ablation, but these were unfortunately followed by another series of SVT episodes and trips to the PICU.
“During one particular episode, because of everything he had been through, he was so distressed about having to be admitted and face being prodded with more needles, he returned his heart rate back to normal on his own. He was so traumatised that he physically screamed his heart rate down.”
After yet another SVT episode and trip to PICU, Michael’s cardiologist called Karlie and suggested they have another go at an EP study.
“They were so worried about his mental health after his last episode that they wanted to try the EP study again. We weren’t sure because the last two times weren’t successful. But a few days later, he went into SVT again. That made up our mind for us – we had to do whatever we could to make sure our boy could have a normal and happy life.”
In early August 2022, Michael was admitted to hospital for his third EP study procedure. Before he went into the procedure, clinicians performed a CT scan under general anaesthetic. The images generated were then merged into a 3D mapping system, an innovative piece of technology that would help Andreas to identify the points inside the heart that were causing the SVT.
With this precision guidance, the assistance of a specialised sheath to help position the ablation catheter, and many hours of delicate work by Andreas, all the extra pathways were finally ablated.
“He was gone from us for about seven hours. The whole time I was just hoping this procedure would work. And so far, it has, and he is medication free for the first time in four and a half years.”
As Karlie explains, Michael is like a new child, something that she attributes to the use of the 3D mapping tool and the expertise of clinicians like Andreas and his team.
“I am so grateful that this technology exists. Without the 3D mapping system and Andreas, we would still be in and out of RCH with SVT episodes, so knowing that the hospital will be able to get an even better version of this machine thanks to philanthropy is incredible. It has changed our lives, and we know that it will change the lives of so many more kids like Michael.”
“To know that there are people like the Auxiliaries who work so hard to raise money for equipment like this means the world to us. We are so lucky to have such generous people who want to invest in the future of our children,” she added.