Make a difference to Butterfly

Jess and her family know the Butterfly ward better than most. Her son Jack was diagnosed with congenital diaphragmatic hernia (CDH) at 12-weeks’ gestation, and from then on, Jess has been a pioneer in advocating for young Jack.

Arriving prematurely at 31-weeks in 2020 added its extra complications for Jack—he spent four months in Butterfly during the pandemic, enduring countless highs and lows on the way.

“During our time in the NICU, there were some really confronting moments and challenges,” said Jess.

“One thing I always valued about our stay in NICU was the medical professionals asking and really valuing our thoughts and opinions on Jack’s wellbeing.”

“I remember in the first few days being asked how Jack was going, and I wondered why the medical professionals were asking me. But as time went on, I realised this was part of a patient-centred care model, and my husband and I brought a different and important perspective, a parent’s perspective.”

On day 120 of their journey, Jack was able to go home with a feeding tube and oxygen, considered as one of the most memorable days of Jess’s life.

“When times were tough, Jack’s team checked in on us. When he made progress, we all smiled, and throughout it all, we managed to have a laugh in between the tears.”

“We knew Jack best, even if we didn’t have the expected ‘normal’ start to life as a family. And I believe the personal element we bring to any planning of initiatives or research is integral to its success.”

Like Jess’s, the Butterfly team want to hear from families with lived experience to partner with them and help improve the NICU experience at the RCH.

“I love being part of the consumer groups. In partnering with them, I have been able to share our experiences with the aim of benefiting others in the future.”

“I’ve learnt a lot in the process and connected with other families who have been through similar journeys. I also couldn’t think of anything better than giving back to a service that has done so much for us.”

“If you are thinking about getting involved in a consumer group to improve the Butterfly experience, I would say just do it. It’s a wonderful way to share your experiences, good and bad, to support improved experiences and outcomes for future families.”

Get involved

The Butterfly team are creating a register of interested consumers with a lived or living experience to help improve the NICU experience for future patients and their families. To get involved and make a difference to the services we deliver, please register your interest today.

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