Heart Kids NZ: A Family’s Lifeline
Paige had open-heart surgery at just 3 days old.
Paige has coarctation of the aorta - severe narrowing of the aorta. When she was born the blood supply would be cut off to the rest of her body, there is a duct in the heart that is open when they are in utero - which closes a couple of days after birth as their own heart takes over - her aorta was so narrow that meant she was not going to get any blood supply from neck down.
She had open-heart surgery at 3 days old to fix this. Five days later they had to open her up again because there was a complication and Paige got septicaemia. Her vocal cords, which are connected to the aorta, were also damaged by the surgery.
It has been an incredibly tough journey for the family, Paige’s older sister Blakely died at birth from a heart condition, and mum, Emma, said the family is grateful for the support they received from Heart Kids NZ.
“They were just constantly there making sure if we were okay and there was anything we needed. You just feel so alone, but then you've got all that support. And you just feel so well cared for and acknowledged.”
In hospital and unable to leave Paige, Heart Kids family support staff would visit and bring coffee. “You couldn't even go and get a meal, so it was amazing when they offered to sit with her so I could go and get some fresh air.”
Emma is a paediatric emergency nurse and says she knew a little bit about Heart Kids NZ, but didn't quite understand exactly how supportive they are.
“You know, they're just amazing. They're there for you emotionally, physically and financially. Families wouldn't be able to do it without them, there's just no way.