Maddi, Christchurch

How you’re helping children with long-term breathing difficulties live their ‘best life’

This gorgeous little girl is Christchurch toddler Maddison...though to her family and the staff in our Paediatric Intensive Care Unit (PICU), she’s simply ‘Maddi’. 

To put it mildly, Maddi and her family have been through a lot in the last 18 months. But thanks to Starship supporters just like you, Maddi’s home. And not just ‘home’.

Thanks to you, she’s living a mostly-regular life that wouldn’t have been possible just a few years ago. 

Maddi’s airways are too weak for her to breathe on her own for longer than 30 minutes. Yet today she can go outside, socialise with other toddlers, and explore her world.

Maddi’s mum Laurel says Starship’s Long-term Ventilation Care Coordinator, supported by donations like yours, has been a godsend.

It’s a new position, currently in the pilot stage. The Starship Foundation is funding it initially. We hope the Ministry of Health will fund it once we can prove how valuable it is.

We’re confident we will…Denise Rew is already making a big impact.

“I help kids like Maddi get out and live their best lives. There’s so much beyond the hospital walls”, says Denise.

Thanks to supporters like you, since February 2019 she’s been in the Long-term Ventilation Care Coordinator role. 

“We’d be lost without her”, says Laurel.

Laurel and Maddi’s journey since birth 18 months ago makes for scarcely-believable reading. Maddi’s lived through respiratory arrest, cardiac arrest, air ambulance flights, bacterial meningitis, brain surgery, and at least three separate stints in intensive care.

“When it rained, it really poured...but we’re here now”, says Laurel from a playground near the family home in Christchurch. 

For Maddi, the playground is still a relatively new experience. She is one of more than fifteen children around New Zealand living on life-supporting long-term ventilation.

Until recently, these children would have struggled to leave hospital.

Thanks to medical advances, and Starship supporters like you, we can now help these children live active lives in their own communities. 

Denise points out she’s the last in a line of Starship doctors, nurses, and specialists…her work builds on the life-saving work performed by others. 

It’s a job she loves. “Often, a child and their carer have been separated from their family for a long time. Maddi and Laurel are a perfect example – they spent months in Starship. Dad and the other kids were at home in Christchurch. I love that I get to help them be a family again.”

But she needs to train parents like Laurel first. That includes simulation training to connect tubes and equipment, linking families with specialists closer to home, and showing parents what to do in an emergency. 

She then makes sure there’s support at the other end.

“I’m a bridge between Starship and health teams around the country”, says Denise. When a child is ‘repatriated’, Denise travels in advance to train and prepare local nurses, carers, and registrars. 

When everything is ready, children like Maddi get to go home. Parents become the experts in their child’s care, safe in the knowledge they have medical support locally if they need it.

Best of all, the family is together again at home…and for Denise and the Starship team, that’s a fantastic outcome. 

“Our goal is to make sure kids on life-support ventilation get to live their best life…I’m so happy I can help them do that”.

Denise wouldn’t be doing her immensely valuable work without Starship supporters like you.

Thank you for helping us fund this life-changing pilot program. 

Right now, you’re helping 15 children on life-supporting long-term ventilation live far more active, normal lives. 

And more than that, you’re helping families like Maddi’s become whole again.

Thank you for taking the time to read this story. If you’d like to donate now, please do so here.