Photos: Nicola Edmonds.
Excited to find out the sex of their second baby, Corrin and Drew Johnson brought two cupcakes – one pink inside, the other blue – to their 20-week ultrasound and asked the sonographer to give just one back to them.
More than an hour later, they left with a blue cupcake. However, they also received the unexpected news there was likely something wrong with their unborn baby’s heart.
“The sonographer was a bit overwhelmed because she didn’t want to get it wrong. When the scan was taking so long, I thought, ‘She’s just thrown by the cupcake thing,’” Corrin, 24, recalls. “But at the end, she said, ‘There’s something up with his heart, but I’m not positive. I’ll send it off to the boss and they’ll be in touch.’”
Then came a diagnosis of hypoplastic left heart syndrome (HLHS), a serious congenital heart defect where the left side of the heart doesn’t develop properly and struggles to pump blood to the rest of the body.
Left untreated, babies can die within weeks. While he’s not yet born, Corrin and Drew’s son, who they’ve named Bear, already has three major open heart surgeries planned. His first one will be at just one week old.
“The first surgery will take eight hours and it’s the riskiest,” says Corrin. “It has a 70 percent survival rate and thankfully, that’s high. But when it comes to your child, 30 percent is also pretty massive.”
Bear will need follow-up surgeries at six months old, before he turns five. Then, a heart transplant by the time he’s 40.
While it’s a lot to process, Corrin and Drew – who are also parents to 20-month-old Arlo – pride themselves on weathering any storm together, so they’re optimistic about the future.
“Corrin and I have been through a lot already, and we’re both like, ‘That’s life,’” shares communications advisor Drew, 23. “We take the good and the bad, and do it together.
“Our maternal foetal medicine doctor said when she first started, the surgeries for HLHS meant a person’s heart would last 10 years. The fact it has gone up to 40 years is absolutely awesome.”
Leading up to Bear’s birth, they’ve put their Palmerston North home on the market and moved in with Corrin’s parents. This means that they won’t have to worry about paying the mortgage while their son is in hospital.
“They’ve said it’s possible for babies to have other heart deformities you can’t pick up through scans. So, we’re most nervous about Bear’s first week, when there’ll be a lot of unknowns,” says Corrin.
“We could find out that Bear can’t have the surgery. That’d mean he’d go into a whole other plan of palliative care. We’re just like, ‘Please don’t let him be exciting in any way.’ We just want a normal, boring baby.”
It’s a whole new world of medical procedures and risks to navigate for the young couple, who thought they had parenting nailed with their eldest son.
“Since Arlo was such an easy baby, we thought, ‘Parenting can’t be that hard!’” jokes American-born Drew. He first fell in love with Corrin as a teenager in New Zealand.
After a whirlwind three months together, he returned home to the US with the pair committing to long-distance love.
“If you can do the hard part of a relationship when you’re 16, it sort of makes everything else easier going forward,” says Corrin. She visited Drew multiple times until he moved to Aotearoa in 2020.
As they prepare for their biggest challenge yet, Corrin and Drew are grateful for their Christian faith, family and the support of their medical team, Ronald McDonald House, and Heart Kids NZ.
And on the harder days, encouraging messages from strangers about heart babies who grew into happy, healthy adults are helping them stay strong.
“One of the biggest things we initially worried about was whether Bear will be able to be rough with his brother, play sport or grow up to have his own family,” shares Drew. “That’s the least we want for him – just to have a normal life.”
To support Corrin and Drew during their time in Auckland, visit givealittle.co.nz/cause/help-fix-baby-bears-heart
To support Heart Kids NZ and their crucial work, visit heartkids.org.nz/give-now
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