The Little Blue Warrior
Every once in a while you come across a family, whose hardship puts life into perspective.
Their resilience and compassion is both profound and incredibly moving. Lillian Shortland is one of those people. She sat at her son's hospital bedside every day of his short nine month life surrounded by white walls, plastic privacy curtains and the beeping of multiple machines keeping these precious babies alive.
The only interruption coming from the staff in blue uniforms checking vitals, or, on a bad day, the piercing sound of an alarm. That sound is never good especially when it came from the bed in which her beautiful boy Kahurangi-Toa - their Blue Warrior - lay.
When baby Kahu was born, he was a shade of blue – hence the name. Lilly, and partner Eli Pattison were warned at the 20 week scan, their third baby would have a heart condition known as Tetralogy of Fallot - a combination of four different heart defects as well as Pulmonary Atresia. What they didn’t know was that little Kahu would arrive 6 weeks early, with two depleted chromosomes, he’d be deaf in one ear and blind in one eye. They also had no idea of the hurdles they’d have to overcome, the fear, the worry, and the utter exhaustion.
“I think it’s safe to say we have been to hell and back”, smiles Lilly bravely.
That would have to be the understatement of the century. This stoic young mum of three has seen her boy go into cardiac arrest too many times to mention, she’s watched him endure multiple medical procedures including four surgeries, the first at just eight weeks old.
One thing that has been a constant in their lives, is the support from Heart Kids.
“Just two weeks after the scan someone from Heart Kids made contact with us. It was a moment I will never forget. Our entire world had been turned upside down, we had no idea what the future held, and there was Heart Kids to hold our hand, guide us, support us and just BE with us every step of the way.”
Heart Kids provided the family with information, books, food, petrol vouchers, and so much more. With two young girls (5yrs and 6yrs) to look after and a seriously ill baby to care for, the struggle just to keep things as normal as possible for the family was huge.
“My day would usually start at 630am, when I got the girls ready for school. I’d be at the hospital by 9am and stay until around 7pm. Sometimes Lilly would have to stay at the hospital, especially when Kahu took a turn for the worse. “That’s when the wheels would come off. And that’s when Heart Kids stepped in. They might have the pre-cooked dinners for us, so I could at least feed the family. It’s the small things that have a massive impact.”
“When Katya or Diane from Heart Kids arrived on their morning rounds I would immediately feel better. Their smiles, words of encouragement, and sometimes their shoulder to cry on, was more valuable to me than anything else. It is often the highlight of the day.”
The couple became experts in the care of their child. When little Kahu was transferred to Waitakere Hospital the couple were thrown in at the deep end. “We were there for six days, and didn’t have an assigned nurse 24/7, so we had to learn what to do pretty quickly. When Kahu stopped breathing we would just fly into action,” explains Eli.
Sadly little Kahurangi Toa lost his battle for life at just nine months old.
From his memorial "Named to be a warrior he was a little fighter, a soldier to the end. His courage, strength and desire to be a happy, playful, smiley boy and to enjoy his 'well' times has inspired so many around him and afar. Rest in Peace at last little man. We held you in our arms for a short time, but we will hold you close in our hearts forever and always.
Moe mai ra e te pepi whatukura a Kahurangi Toa
Kua tuhangai ou parirau
Kua rere atu koe ki tua o te arai
He aroha mutunga kore mou