Corrin, left, Drew and toddler Arlo will stay in Auckland from September until Bear is born at Starship Hospital and recovers from his first heart surgery. Photo / Lokyee Szeto
Corrin, left, Drew and toddler Arlo will stay in Auckland from September until Bear is born at Starship Hospital and recovers from his first heart surgery. Photo / Lokyee Szeto
Bear Oskar Foley Johnson isn’t yet born but the baby due in October already has three open heart surgeries planned.
At their much anticipated 20-week scan Bear’s expectant parents, Corrin and Drew Johnson, were told “something wasn’t quite right” with their unborn baby boy’s heart.
“At the scan the sonographerspent more than an hour looking at baby’s heart and he just said something didn’t look right and wanted to send it off to be looked at,” Corrin said.
There are around 40 different congenital heart conditions in New Zealand according to Heart Kids NZ and HLHS is one of the most serious. Urgent surgery is needed for babies to survive.
“The specialist started off the conversation saying as long as Bear was in my belly he was safe, as safe as any other baby,” Corrin Johnson said.
“It was reassuring to hear because we thought at least we could be calm for the next 20 weeks until he arrives.”
The couple, who also have an 18-month-old son called Arlo, were told Corrin needed to give birth at Starship Hospital and Bear would need open heart surgery when he was a week old.
They have been told the procedure has around a 60% chance of a “positive outcome” which Corrin describes as “better than 50%”.
Bear will have another open heart surgery at six months and then another at 3 years.
He will also need a heart transplant when he is around 30-40 years old.
“It was a huge shock because the pregnancy had been really smooth, much better than our last pregnancy, so we were not expecting it,” Corrin said.
Specialists found Corrin and Drew's unborn baby had the congenital heart defect Hypoplastic Left Heart Syndrome (HLHS).
“The specialists were really good at explaining what HLHS was, they drew pictures and took us through each step and stage of each operation.”
The couple was told the operation extended the life expectancy of the heart by three times as the same operation five years ago.
“That means years ago he would have had to have a heart transplant when he was 10 - now it’s more likely to be well into his 30s or 40s and we are hoping for longer.”
The young family has just put their home in Palmerston North on the market to move to Wellington to be near Corrin’s parents for support.
The couple will move to Auckland in September to be close to Starship.
Kirsty Wynn is an Auckland-based journalist with more than 20 years experience in New Zealand newsrooms. She has covered everything from crime and social issues to the property market and consumer affairs.
