This October, Waiaarangi and her family will join the HeartKids community at the Kiama Two Feet & A Heartbeat walk.
At just five months old, Waiaarangi was unexpectedly diagnosed with a heart condition after becoming unwell with RSV. Just one month later, she underwent open-heart surgery.
Now 2.5 months after her operation, Waiaarangi is thriving as a happy, energetic little girl. Her mum, Kayla, shares her heart journey and the support HeartKids has provided along the way.
Can you tell us about Waiaarangi’s heart journey?
Waiaarangi had open-heart surgery at 6 months old for an Atrial Septal Defect (ASD) and Ventricular Septal Defect (VSD) closure and tricuspid valve repair.
When Waiaarangi was five months old, we were in New Zealand visiting family when she became sick with RSV. When I took her to hospital, they picked up on her heart murmur.
Everything happened so quickly and unexpectedly. Before we knew it, we were being told she had a large hole in her heart and wasn’t able to have surgery straight away because she needed time to recover from RSV.
Three weeks after returning to Australia, I spoke with the surgeon who set her surgery date for the following week. Once I got off that call, I cried and cried. I was scared of my baby having open-heart surgery, but I also knew she needed it, and that was something I just had to come to terms with.
Despite all our worries, Waiaarangi’s surgery went smoothly. Seeing her recover so well from surgery made coming home from the hospital such a relief.
Now, 2.5 months post-op, seeing Waiaarangi thrive- being her happy, energetic little self and learning new things every day- makes all the long trips to hospital appointments, both those we’ve had and those we’ll continue to make for the rest of her life, worth it.
How has HeartKids supported your family?
When Waiaarangi was diagnosed so unexpectedly, everything felt overwhelming and frightening. Having an organisation like HeartKids there to provide support and information has made such a big difference.
We’re so grateful to know there is a community there for us.
What do you wish more people understood about childhood heart conditions?
I’d like people to understand that a heart condition doesn’t always look the way people expect. Behind a happy, smiling child can be a family navigating something incredibly difficult, and every heart journey is different.
What would you say to another heart family?
Take it one day at a time and trust that you’re doing the best you can for your child.
To support families like Waiaarangi’s, register to attend your local Two Feet & A Heartbeat walk today.
