Kahurangi-Toa: 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.  Yet, from where they sit, they only have thoughts for others whose struggle is greater.

Lillian Shortland is one of those people. As she sits at the bedside or her seven month old son, she remarks on how lucky she is and how blessed her family is to have this gorgeous boy in their lives.

She has sat on the grey vinyl chair, or one very similar, for 226 days.  The scenery doesn’t change much;  white walls, plastic privacy curtains, 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 comes from the bed in which her beautiful boy Kahurangi-Toa - their Blue Warrior - lies. 

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, the most recent just this week – an open heart surgery. 

“Unfortunately he is just a really sick baby, just when he looks like he’s recovering from one procedure, he gets struck down with some infection or another.  He’s had two bouts of eColi, one of rhino virus and he stops breathing all the time.”

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 has provided the family with information, books, food, petrol vouchers, and so much more.  With two young girls  (4yrs 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 is huge. 

“My day usually starts at 630am, when I get the girls ready for school.  I’m at the hospital by 9am and stay until between around 7pm.  Eli picks the girls up, feeds them and by the time I get home, we do any homework together and put them to bed.  I’m usually up until about 2am prepping for the following day, doing washing, ironing, housework and cooking.  You have to be pretty organised.”  But sometimes Lilly has to stay at the hospital, especially when Kahu takes a turn for the worse.  “That’s when the wheels can come off.  And that’s when Heart Kids step in. They might have the pre-cooked dinners for us, so I can at least feed the family.  It’s the small things that have a massive impact.”

Because Kahu is on a ventilator, he is not easily moved around.  This makes for long days sitting around. 

“When Katya or Diane from Heart Kids arrive on their morning rounds I immediately feel better.  Their smiles, words of encouragement, and sometimes their shoulder to cry on, is more valuable to me than anything else.  It is often the highlight of the day.”

The couple have become 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. 

Listening to them talk with Kahu’s assigned nurse in PICU about all the tubes and machines hooked up to their baby, you can be forgiven for thinking they ARE part of the staff. “Lilly is a superstar’, exclaims one of the nurses.  “She’s really hands on and is an amazing mum. They;’re both such wonderful parents.”

“I do wonder what I used to do with my life – how I used to fill my days, before Kahu,” laughs Lilly.

Lilly who has already completed one year of nursing training, is seriously considering going back to study.  Her deep understanding of congenital heart defects now and her intimate knowledge of the New Zealand health system has reignited the passion.  “I’m absolutely fascinated by it, I love learning all the medical terminology and procedures and I certainly don’t find anything squeamish now.”  But her top priority is getting Kahu home and well.

“He’s an amazing little battler.  He loves kisses and cuddles and everything that is shiny. His nickname in the hospital is ‘magpie’. But he deserves a normal life at home with his Dad and sisters before I go chasing my own medical dream.”

It’s hard to know what the future holds for little Kahurangi-Toa, he will need several more surgeries and rehabilitation will be a long road, he won’t be leaving hospital any time soon. “We just take it one day at a time, that’s all you can do and look forward to the day we can bring our boy home.”

 “We are just so grateful to Heart Kids for the love, kindness and support – emotional and practical they have and continue to give us all.    They have shown us that we are not alone, and we do not have to face the future alone.  They are such a huge part of our family now, and always will be."

Created on: 24 February 2019