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Simone Kessell’s brave Beau

He's my little battler!

Cuddling up to his mum while eating chips on the couch of their Hollywood home, three-year-old Beau is blissfully oblivious to the horrific first year of his life. It’s only thanks to the strong parental instincts of his mother, Kiwi actress Simone Kessell, that the youngster has survived.

“It was a year from hell,” tells the Underbelly and Terra Nova star, 41. “If I hadn’t been diligent, he wouldn’t be here.”

Three years ago, in Sydney, just as Simone, her husband Gregor Jordan and their son Jack, now 11, were relishing their first weeks with baby Beau, the infant developed what doctors dismissed as stridor breathing, a noisy flow of breath.

Although two GPs, a paediatrician and a medical helpline all assured the actress he’d grow out of it, Beau’s health started to deteriorate. His fight to breathe became so exhausting, he stopped feeding and started looking “skeletal”.

Simone recalls, “I thought, ‘Something’s definitely wrong.’ He looked so sick, but when you’ve been told by doctors he’s fine, what do you do?”

Desperate for answers, she appealed to a nurse, who took one look at seven-week-old Beau and said, “Go right now to emergency.”

In hospital, the baby was diagnosed with laryngomalacia, a condition where the larynx partially caves in and causes airway obstruction, and sleep apnoea, where breathing stops for extended periods while sleeping – in Beau’s case, up to 40 seconds per minute. Oversized tonsils and Pierre Robin syndrome, where an under-developed jaw causes the tongue to drop back into the throat, were also hindering Beau’s breathing.

“He had everything upper-respiratory going against him,” tells Simone, who moved from Auckland to Sydney at 18 and now lives in Los Angeles. “I was in shock. Every specialist came in and he was like a case study because he had such severe breathing abnormalities.”

Beau was immediately taken into surgery to have his larynx operated on to help open his airway. But although the operation was performed just in time, he then developed a fever, prompting a lumbar puncture to rule out meningitis.

“That was the straw that broke me,” recalls Simone.

“I said, ‘You’ve stuck so many needles into this baby – you’re not sticking one into his spine when I know it’s not meningitis!’ I had kept it together for so long, but that flipped me. A nurse had to escort me out because I could hear him screaming and I was like, ‘I can’t do this any more!’”

Meningitis was ruled out, but Beau remained in and out of hospital for the next six months while doctors monitored his sleep apnoea, one of the most severe cases they’d seen.

As Australian director Gregor, 49, took leave from helming the Sam Neill series Old School and Simone’s parents flew in from New Zealand, the actress stayed by Beau’s side, pumping breast milk and feeding him through a nose tube.

“I was falling apart,” admits Simone, who starred in the TV series Hercules and the film San Andreas. “You dream of bringing home a perfect, happy baby and when you don’t, it’s shocking. That first year is meant to be lovely. Ours was spent in hospital. What kept me going was knowing I wasn’t going to leave that hospital without Beau. My fight was to do everything to make that happen.”

The couple will never forget the “incredible” day 16-month-old Beau received the all-clear and they victoriously returned the mask he had to wear while sleeping to the hospital.

Simone tells, “Gregor had been holding it together for so long, but he was like, ‘You can have that back!’ and started sobbing. I had a case of wine for staff and quickly started handing that out.

“That year shook up our world, but it also taught us he’s a little fighter. It brought our family closer and made me get over myself. I don’t sweat the small stuff any more. It put life into perspective.

“But the biggest lesson was to trust my gut. We have access to incredible healthcare, but it’s up to you as a parent to constantly ask questions if you think something’s wrong. Doctors aren’t always right.

“If you were a first-time mum driving from a rural town into the city and doctors said, ‘He’s just a noisy breather,’ you’d take that baby home and he’d eventually die because he’d stop breathing.

If I hadn’t gone to that nurse, Beau wouldn’t be here today. His body was running out of energy.”

Today, Beau’s a healthy, happy boy, clowning around with a Superman balloon and showering his mum with the words “I love you” throughout our shoot in LA. The family moved back to the City of Angels after putting their hospital visits behind them and Simone soon landed a key role on Of Kings and Prophets, which ran on TVNZ OnDemand last year.

After filming the Biblical series in South Africa, she’s relishing some rare downtime in California but hopes to return to Aotearoa soon. She smiles, “We took back Beau’s whenua [placenta] and buried it under a cherry tree where my mum’s family is from, near Taupo. It was beautiful. Part of me is always in New Zealand.”

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