At just four weeks old, Luke Kisling underwent emergency open-heart surgery at Auckland’s Starship Hospital after doctors discovered his heart condition was far more serious than first believed.

Now safely home in Whakatāne after spending more than six weeks between hospitals, his parents, Nichola Coad and Jacques Kisling, say they want to raise awareness about congenital heart conditions and thank the organisations and medical teams that supported their family through what they describe as “the most intense days of our lives”.

During a 20-week anatomy scan, doctors diagnosed Luke with AVSD (Atrioventricular Septal Defect) – a condition that affects the structure of his heart – along with Trisomy 21, also known as Down syndrome.

“We were told there was a hole in the muscular wall between the left and right side of his heart, that it was treatable and had a high success rate of surgery,” Coad said.

Supported by Coad’s mum, Doreen Hornby, the family began regular appointments with Maternal Fetal Medicine Network specialists in Auckland and connected with Heart Kids New Zealand for support.

“Jo, from Heart Kids NZ, has been with us every step of the way. She sent me a book on all the different heart conditions, touched base every week and connected us with other families and gave Luke a special Heart Kids NZ teddy called Maia the bear.”

At 38 weeks pregnant, Coad attended a routine appointment at Whakatāne Hospital, where she told her midwife she felt her baby was moving less than usual.

“Whitney Haddock was just so amazing at picking up just a tiny little blip on his heart monitoring. She was like, ‘No, I’m not happy with this’,” and Coad was urgently transferred to Tauranga Hospital, where doctors decided Luke needed to be delivered immediately.

Luke was born via emergency C-section on Tuesday, February 17, this year.

He initially required oxygen support and an NG feeding tube before being transferred back to Whakatāne Hospital’s SCBU (Special Care Baby Unit).

At six days old, Luke tested positive for rhinovirus (the common cold) and his condition deteriorated further.

On March 5, Luke was reviewed by paediatric cardiologist John Sterling, who confirmed he had gone into heart failure.

“The cardiologist said, ‘This is way worse than we anticipated, the hole’s bigger,’” Coad said.

“He has one valve instead of two valves. The wall between his two chambers was non-existent.”

On March 11, doctors arranged an emergency helicopter transfer for Luke and Coad from Whakatāne Hospital to Auckland’s Starship Hospital. Kisling and Hornby headed off ahead of them, having a surreal moment hours later seeing the helicopter pass them knowing Luke was there.

Luke was admitted to Starship’s PICU (Paediatric Intensive Care Unit), where staff changed his breathing support to bubble CPAP (Continuous Positive Airway Pressure) as his condition worsened.

On March 18, doctors told the family he would need immediate open heart surgery the next day. Luke underwent a full repair operation on March 19 and spent two hours on a heart bypass.

“It was complete shock. We were living in complete survival mode.

“That was the most intense day, waiting for news of the open heart surgery. Then seeing Luke post-surgery was the hardest thing we have ever been through,” Coad said.

“All the equipment, the pipes, machines and medication monitors – it was terrifying.”

Despite concerns about how such a young baby would cope, Luke surprised medical staff with the speed of his recovery.

“He surpassed most of the nurses’ and doctors’ expectations. We would go from Ronald McDonald House to Starship post surgery and each day we would find another machine had come off and another medication weaned off.”

In the PICU at Starship, support people are unable to stay bedside because patients are critically unwell and surrounded by complex medical equipment. March 23 was the first time Luke’s parents were able to hold him again post-surgery.

His parents stayed at the Ronald McDonald House, a five-minute walk from Starship, while Luke recovered.

“Until you’re in it, you don’t realise how important those services are,” Coad said.

“The PICU Starship/Whakatāne SCBU/Maternity staff were all kind, caring and empathetic, they treated Luke as if he was their own.”

Luke spent 20 days in Starship.

“They were the most intense days of our lives. He was so sick. We were expecting him to needed heart surgery; we just weren’t anticipating it happening so quickly and so dramatically. It came as a complete shock to us all, and the ordeal was quite traumatising.”

Luke and Coad returned to Whakatāne on March 31 aboard a Life Flight service and spent additional time in Whakatāne Hhospital establishing feeding.

On April 4, the family were finally able to return home together for the first time since Luke’s birth.

“It was such a good feeling to be home and under one roof for the first time since Luke was born,” Coad said.

Luke has an older brother, James, 7, who stayed in Whakatāne with his dad during the ordeal.

“It was such a load off my mind knowing that my first son was safe. But your heart’s split between two places.”

Although Luke’s surgery was successful, he continues to receive ongoing care from dietitians, physiotherapists, speech and language therapists and other specialists.

“He shouldn’t need any more surgeries, but he will need ongoing monitoring for the rest of his life.”

Coad’s sister, Pamela Buckingham, another massive support in the family’s village, created a Givealittle page: https://givealittle.co.nz/cause/support-little-lukes-big-fight to assist with the financial strain, unpaid work leave, and ongoing medical appointments and treatments.

“If anybody contributes to the Givealittle page, it’s appreciated and kind, but it’s not really about that.

“We mainly want to raise awareness of the condition and acknowledge the people who have helped,” Coad said.

“Heart Kids New Zealand, Whakatāne Hospital SCBU , Starship PICU and 23b Heart Ward, Ronald McDonald House, Life Flight, ambulance crews, we’ve had nothing but a wonderful experience with them. These services are invaluable and I want to encourage people to support or donate to these charities.

“In our wider friend circle there are at least two families whose babies have been found with heart conditions.

“We are truly grateful for the support and resources we know will be there to help them too.

“It highlights for us how many more babies and families are being affected by heart conditions some families don’t know until the babies are born, so to have people like Jo from Heart Kids NZ is imperative.”

Despite the challenges still ahead, the family are focused on enjoying life together at home.

“He’s blossoming, he’s gaining weight, he’s doing all those wonderful things. He is a complete little warrior and fighter.”