Unborn baby’s serious heart condition, will need three surgeries after scheduled October birth

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 sonographer spent 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.

A subsequent scan confirmed Bear has a serious heart condition called Hypoplastic Left Heart Syndrome (HLHS).

The congenital defect means the left side of the heart is underdeveloped and unable to pump oxygenated blood to the rest of the body.

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.

“We can’t risk going into labour so we need to be there well before he’s due,” Corrin said.

They will need to stay in Auckland until Bear has recovered from his surgery.

Corrin’s mother Lisa Shearer set up a Givealittle page to help support the family after Bear’s arrival.

Drew will take time off work so the pair will have no income.

Corrin, Drew and Arlo Johnson can't wait to meet baby Bear in October despite the challenges ahead. Photo / Lokyee Szeto

“This is going to be a very stressful time both emotionally and financially,” Shearer said.

The family was being supported by Heart Kids NZ and had been introduced to other parents facing similar challenges.

Claire Sword from Heart Kids NZ said the family would be supported from pre-natal and throughout adulthood.

Heart Kids NZ has two family support workers at Starship to provide advice and emotional support.

“There are the financial worries of being away from work and home and then for what your child is going through,” Sword said.

“It changes your whole life so we are there to support families right the through.”

Corrin said Heart Kids NZ had been amazing and had already put her in touch with other parents going through the same thing.

“It has been great and makes us feel a lot less alone.”

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.