Given his bright eyes and bundles of energy, it is hard to believe Tauranga toddler Taika Macefield lives with a life-threatening heart defect.
So far in his short lifetime, he has undergone major heart surgery and spent three months at Starship Hospital in Auckland.
Taika’s mum Natalie Mankelow says her life “turned upside down” when faced with the possibility of losing her baby.
She found out about his rare heart defect after a pregnancy scan at 23 weeks gestation.
“The midwife called to say there was something wrong with his heart, that it looks like it is the wrong way round.
"It was pretty devastating to hear because you are not sure if they are going to survive, and there is such a long wait. It is all so unknown."
The 16-month-old boy has Congenitally Corrected Transposition of the Great Arteries.
CCTGA is a rare heart defect in which the heart’s lower half is reversed.
According to the Adult Congenital Heart Association, two ventricles and their attached valves are reversed so that the weaker, larger right ventricle grows on the heart’s left side. It pumps blood around the body.
The stronger, smaller left ventricle grows on the heart’s right side. It pumps blood to the lungs.
Natalie, her partner Leon Macefield and their daughter Maila moved to Auckland when she was 37 weeks pregnant so Taika could be born under the care of the pediatric cardiologists at Starship.
He was taken to the Pediatric Intensive Care Unit immediately after being born.
At only 12 days old, Taika underwent a major surgical procedure that had only been performed a couple of times previously.
To the family’s delight, the double switch surgery was a success. They spent the next three months in Auckland while Taika recovered in hospital.
Reflecting on Taika's journey brings Natalie to the point of tears.
"There is a rollercoaster of emotions you go through. Part of it is grieving the normal pregnancy you were supposed to have, and then when the baby is born you have to face the possibility of losing the baby.
"There's also the financial pressure you are put under. We are small business owners, and I was on maternity leave. There was no income because Leon needed to be with me."
Nowadays, the only sign of Taika’s heart defect is the large scar that runs down the middle of his chest.
He lives day to day life like a ‘normal boy’, but needs to stay clear of large gatherings due to his low immunity.
“We don’t see external symptoms at the moment which is pretty cool - it’s just like he’s a normal boy,” Natalie says
But she reiterates the heart defect will stay with Taika for the rest of his life, with there being a good chance he will require another open-heart surgery.
“It doesn’t just go away. That’s a misunderstanding we had – that after the first surgery that would be it.
“There are a few things still wrong with his heart, and they have said he will need another surgery but we don’t know when.”
Natalie and Leon agree their journey would have been much harder if it weren’t for HeartKids.
The not-for-profit organisation provides ongoing support in the form of food, resources, advice and hugs.
“They know exactly what you are going through. At the hospital, they would always poke their head in – and they could just read the room.
“They would always know what you needed – a listening ear, a hug or a coffee.”
Emotional support from HeartKids staff was crucial to getting them through.
“It’s so important to have that support – because you have never confronted anything like that before and you don’t know what’s coming next.
“It is so nice to have someone who has seen what you are going through."
Every week in New Zealand 12 babies are born with a heart defect, that is one in every 100 births.
A congenital heart defect is the most common birth defect and it is the number one cause of death in babies and newborns.
“Every year, more than 600 major heart surgeries are performed on children or babies, sometimes in their first few hours of life,” says Heart Kids spokesperson Nicola Garland.
“For many, this won’t be their last operation and they will continue to face the day-to-day challenges associated with their heart condition for the rest of their lives – and that’s what we are here for.”
Natalie believes the family will have a strong relationship with the organisation for years to come.
An important lesson learnt on this journey with Taika is to value the time you spend with your kids, Natalie says.
“When you are faced with their mortality, it brings it into perspective.
“Taika has enabled us to adjust our parenting and our perception of how long you should stay at home with your kids. We really value the time we have.”
She can’t wait for the day Taika is running around with his mates at Kohanga Reo, but says for now they are just making the most of having him home.
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