Butterfly, the RCH NICU provides care for the sickest babies in Victoria. Babies admitted to the ward require specialised, intensive and high dependency care, which can be a scary experience for parents, particularly at a time where bonding with their newborn is so vital.

While clinical teams treat the babies with medicines, operations, and machines such as ventilators, a new program is putting parents at the centre of their children’s care.

Dr Leah Hickey

Thanks to generous support from the RCH Foundation Bed Sponsorship Program, the RCH have implemented a specially designed model of care called Circle of Care Optimising Outcomes for Newborns or COCOON for short. This places the baby and family at the centre of everything the NICU care team does. The key to its success is the dedicated COCOON care coordinator role, which is fully funded by the Bed Sponsorship Program.

“We know that having a baby in NICU for any length of time can be really stressful for families. Parents experience increased anxiety and depression in the short term and can suffer from post-traumatic stress disorder later on. A baby’s development can be affected by both their illness and separation from their parents, and these things can affect the child well into the future,” said Dr Leah Hickey, Director of Neonatal Medicine at the RCH and COCOON Project Lead.

“We designed COCOON as an intervention to try and minimise the negative effects of a NICU admission on the babies and their families.”

COCOON is based around three pillars; staff education, parent education and the COCOON welcome pack, which have been created to empower parents to be fully involved in the care of their newborn. Parents are mentored and supported to do tasks, like changing their babies feeding tubes or their nappy, so they can feel more connected to their babies. They are also armed with resources and given additional tools that help them to care for and bond with their baby in preparation for going home when they are ready.

“When we first started planning for COCOON, we worked directly with families to see how they were feeling and what they needed. Some of the feedback was that they didn’t feel like they knew their babies after their stay, or they felt overwhelmed and didn’t know if there were able to touch their baby,” said Leah.

“Family centred care is considered the gold standard in maternity hospital NICUs around the world, however most of the research and development has been focused on preterm infants and does not capture the impact of a NICU stay on other babies with complex medical and surgical problems, such as those cared for on Butterfly. We knew we needed something that was specific to the babies and families at the RCH, so we created COCOON based on their needs.”

Thanks to philanthropic support, COCOON has been able to flourish. Donors have generously funded a COCOON care coordinator position to lead the implementation of the program alongside Leah. Jenna Rhodes, an experienced NICU nurse was initially appointed to the role before recently going on maternity leave. The role is currently split across two experienced NICU nurses, Arnie Krishnan and Polly St John, who each work part-time to support families on the ward.

“The introduction of the COCOON care coordinator has allowed us to take that COCOON model a step further and give every day, face to face support to the families of NICU patients,” said Leah.

“Polly and Arnie spend a large part of their day on the ward, ‘COCOON-ing’, as staff call it. They meet the new families, give them our new COCOON welcome packs, and make sure they feel supported from the get-go. They also help to educate, mentor and support other NICU staff.”

“The initial introduction happens in the first 48 to 72 hours and from there the COCOON care coordinator becomes one of the main supports for the parents. They wear so many hats – medical, nursing, social work, infant mental health, and a general support person.”

The COCOON care coordinators also facilitate things like their COCOON Huddle, where the parents and care team discuss the baby’s development and celebrate what they can do, such as turn to voices or settle themselves when they get a bit upset and talk about getting ready to go home. In addition, they run the ward parent education program, covering topics such as baby resuscitation and how to give medicines. These sessions currently have a 97 per cent parent satisfaction rating.

“The nurses and COCOON care coordinators support parents who cannot be on the ward at the time to engage with their babies using a video-calling platform called COCOON BabyChat. It allows parents to see and hear their babies, chat to them, and get an update from the staff at the same time. This helps them feel connected to their babies,” said Leah.

“We have been collecting data since the launch of COCOON and hope to show that by engaging families in the care of their babies right from the start, COCOON improves important outcomes such as family experience at RCH and mental health for both the babies and their families.”

“Without the incredible support of the Bed Sponsors, we could never have gotten COCOON to where it is. When you read the feedback from the families, it is clear how much of a difference it makes to their lives, which is just priceless,” she added.