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Tricuspid atresia: baby starts turning blue

Now 35 years old, Karl’s congenital heart condition was first discovered soon after he was born. He still battles fatigue, but has learnt to live with limitations on what he can do.

It was every mother’s worst nightmare. While bathing her three-day-old baby, little Karl’s skin began to turn blue.

Still in Wellington hospital, Karl’s mum quickly found medical help while a family friend took their boat out to try and contact Karl’s father who was out fishing. In the meantime, Karl’s mother was receiving devastating news from the doctors. The blue skin was a symptom of tricuspid atresia, a heart condition which occurs when one of the heart valves hasn’t formed properly. She was also told that two of the ventricles in Karl’s heart hadn’t developed properly.

Baby Karl was immediately sent to Greenlane hospital in Auckland for open heart surgery, to re-route the flow of blood through his heart.

It was the first of many visits to hospital for a variety of procedures and complications related to his condition. At the age of five, Karl developed endocarditis, an infection in the tissue lining his heart chambers. That particular hospital stay lasted for four months.

“I had my parents around and my grandparents and aunties and uncles always visiting and stuff. So I had good family support,” Karl says.

Growing up with a heart condition

At school, Karl didn’t know anyone else with a heart condition. He played soccer, having been told to avoid contact sports, but found it hard keeping up with the other kids. It’s something he still struggles with today.

“I do get tired, I’m constantly tired all the time.”

At the age of ten, Karl had a Fontan procedure to re-route how blood was pumping through his heart.

“After that last operation, I haven’t had any more trouble with my heart.”

Looking after his heart

Karl went on to play rugby for a while, but recently retired due to injuries – much to the relief of his cardiologist. He’s recently dropped his specialist appointments down from twice a year to just once.

“My cardiologist is pretty happy with me. I feel like I’m on the other side of it and I’m currently working as a plasterer in Wellington.”

Karl is still limited in his outdoor pursuits. “I do a bit of fishing but I can’t do most things that my friends do. They like to go scuba diving and I can’t do that, I’m not allowed to go scuba diving. It’s still hard to keep up with other people. It used to bother me when I was younger but it doesn’t bother me now because I know I can’t do it.

“Like my doctor says, you’ve got to look after what you’ve got.”



Shared August 2018

Please note: the views and opinions of the storyteller and related comments may not necessarily reflect those of the Heart Foundation NZ.

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  • Karl 14 February 2020

    Thank you. I hope you will be fine. I try to exceed limitations

  • Becky 2 November 2018

    Thank you for sharing your story! The fatigue is something I’m still learning to adjust to. I’m a cardiomyopathy patient and I was used to being able to keep up with my work and fishing, kayaking and lifting things that I’m just not able to anymore. I hope I will get to the point where I remember I have limitations, I’m still wanting to dive off a boat or kayak out into the current but I’m just not strong enough. All the best with your journey!