No parent ever expects to spend time in the NICU, let alone twice. For parents, Alex and James, this became a reality after both of their newborn daughters – Lacey and Holly – experienced lengthy stays on Butterfly.

In what can be a terrifying time for any parent, a specially designed family centred care program at the RCH called COCOON made Alex and James felt completely involved in the care of their daughters.

When their first daughter, Lacey, was born, she was diagnosed with Pierre Robin Sequence (PRS), a rare congenital birth defect where babies are born with a small lower jaw, and often a cleft of the palate, making it difficult to breath and feed.

“As a first time parent, you’re already terrified. So, when you are told your child has a rare condition and needs to be admitted to NICU, that fear is given a whole new meaning. However, the staff on Butterfly were incredible. They were so supportive and understanding,” said Alex.

“The first thing they told us to do when we arrived was to download the RCH Portal App, where we could access the COCOON resources, which covered off things like feeding and how to bond with the baby even when you can’t pick them up.”

“I remember finding the resources really helpful, particularly as a first-time parent. It helped take some of the unknown out of the situation and allowed us to focus on Lacey at an incredibly overwhelming time.”

Lacey, nine months old

After three months on the ward, Lacey went home and grew into a strong and cheeky little girl. As Lacey grew, so did COCOON. Thanks to the generous support of the RCH Foundation’s Bed Sponsorship Program, the RCH appointed the very first COCOON care coordinator, Jenna Rhodes, to help support the roll out of the program on Butterfly. This role was taken over by nurses Arnie Krishnan and Polly St John when Jenna went on maternity leave in early 2021.

When Alex and James fell pregnant with their second daughter, Holly, they knew that there was a chance she too would have PRS, which was confirmed at their 20-week scan.

Holly was born in September 2021, and Alex and James found themselves on Butterfly for the second time in two years. This time, as well as the COCOON resources, they had the support of the COCOON care coordinators

“Arnie and Polly are so active on the ward. They have allowed me to feel supported and confident while caring for Holly,” said Alex.

“In NICU, you feel so hesitant just going in and picking up your baby. Holly was
hooked up to more cords than an electrical store, however the COCOON care coordinators really encourage you and give you the confidence to interact with your baby, which makes me more relaxed, and as a result Holly is much more relaxed.
You don’t feel like you have to walk around on eggshells, which means your baby can’t feed on your anxious energy because there is none.”

“The feeling you get from both Arnie and Polly is that they genuinely care about you and your baby. It is like having your own little cheer squad around all the time. Especially for me, not having family and friends in Melbourne to drop by and visit, it has been so beneficial to have an additional layer of support.”

Holly on Butterfly

In addition to the support received from the COCOON care coordinators, Alex has also found the COCOON welcome pack incredibly meaningful.

“When you arrive to Butterfly, you’re given a welcome pack that contains orientation brochures, as well as books for your baby, a communication board, a felt heart scent cloth and other resources.”

“While it may seem so small and insignificant, it means a lot, particularly if you’ve come to the ward without any of your own things. That book becomes your baby’s first book. The blanket that you are given, that becomes the blanket they leave hospital in. Everything adds to their story,” said Alex.

“My favourite part is the beautiful felt heart that also comes in the pack. I keep it on me during the day, then at night when I leave, I pop it next to Holly. It is comforting knowing that she has her little heart next to her and can smell me at night – it makes me feel I am there with her. She feels happy, I feel happy, and it makes me feel like I am doing something for her.”

“Thank you to everyone who has helped support COCOON. Having access to something that makes parents feel empowered, supported and seen is so incredible, so thank you.”