Early June marked Heart Kids’ Awareness Week, and the organisation, which receives no government funding, is asking New Zealanders for donations to help it continue its dedicated and much needed support for these special Kiwi kids and their families. Olivia Clark from Howick shares their story
When Howick’s Olivia Clark and her partner Donovan Clark were told the baby girl they were about to have was going to be born with a heart defect, her own heart broke.
“We went in for a scan at 34-weeks to see her heart in more detail and our whole world collapsed,” said Olivia of daughter Luna.
Luna was diagnosed with Hypoplastic Left Heart Syndrome, coarctation of the aorta, aortic stenosis, Large PDA & more. She had what’s known as “half a heart”.
The couple had three options. “Termination, palliative care or, if she was a candidate after birth, a series of surgeries. For us, at such a late stage, there was only one option – we had to give her a fighting chance,” Olivia said.
“To look at this beautiful, bubbly, kind and loving five-year-old, you would never guess there was anything wrong. Playing with her barbies or dancing around the room, she looks like any other kid her age.
“But this wee girl has been through more than most adults have had to endure in their lifetime.”
At just three-days-old Luna had her first open heart surgery.
Her second came at just three-weeks-old. Her third was at five months and her fourth was at almost three years.
“That was by far our scariest surgery,” Olivia said.
“Watching your child go through major open heart surgeries, three within their first five months of life, isn’t something I would wish upon anybody.
“It was extremely painful and hard. It was heart-breaking but we tried to stay positive.”
Luna’s last surgery almost took her life. Their daughter spent almost five months in hospital with severe complications.
In the end, Luna was too sick to keep fighting her body which was constantly filling with fluid, ‘drowning itself’.
After Olivia gave birth to their son Gray, an inpatient as their daughter was fighting for her life, the couple made the extremely hard and heart-breaking decision to take Luna home and comfort her in what they thought would be the last few weeks of her life.
“Making an end-of-life plan and how we wanted it to go was by far one of the hardest conversations and decisions we’ve ever had to make”.
The doctors aren’t sure how or why, but Luna’s body just ‘fixed itself’ and she is now thriving. Slowly but surely at home she just kept getting better. About a year after they took her home the fluid had mostly disappeared. There was no rhyme or reason. “A real life miracle,” Olivia said.
Heart Kids has been great support throughout the past five years.
“They’ve made us feel like we’re not alone. And the events they put on have allowed us to meet so many other families, which I think is so important” she said.
“Meeting families who ‘get it’ and understand and who can actually relate to what you’re saying and going through is huge.”
- Heart Kids is a only not-for-profit organisation dedicated to supporting New Zealand’s heart children throughout life. Volunteers will be shaking virtual buckets online throughout the entire month of June at shakeabucket.org.nz.
