Piper’s story: The journey of a sick premature baby separated from her mother at birth

Katelyn and her partner Aiden live in Australind, Western Australia, which is about a two-hour drive from Perth. Katelyn was 28 when she gave birth to Piper.

“You are going to have some good days and some bad days… they take two steps forward and one step back. Celebrate the small milestones, like every little gram of weight they gain.”

Mother and baby separated at birth

Katelyn was facing certain life-threatening medical issues when she went into labour at 29 weeks. Piper, their little girl, was born at 1,270 grams within 40 minutes of getting to Bunbury hospital, and had to be transferred from Bunbury to King Edward Memorial Hospital (KEMH) so that she could get the specialised support she needed. Unfortunately, Katelyn and Piper spent the first four days apart as Katelyn needed to stay and recover at Bunbury hospital.

“It was a real shock to the system… I felt really disconnected from her in the beginning. It was like I had had this baby who I was only able to see for perhaps ten minutes but never got to hold her and she was taken straight to Perth so I missed that initial connection. I saw photos of her, which Aiden sent to me from Perth, but I guess I couldn’t really feel that bond until I was able to go up to Perth and actually hold her.”

Piper spent a total of 10 weeks in hospital.

“Every single day I was going in and out of the hospital. I was expressing breastmilk 3-hourly around the clock so that she could be fed through a tube. We just wanted to be there, longing for every cuddle – we were only able to cuddle for about an hour each day.”

Two steps forward, one step back

At the beginning, Piper required the help of a breathing support machine as her lungs were really immature (a common issue for premature babies). At about 9 weeks – which was just before their planned discharge time – she required an operation to repair a hernia. Unfortunately, after this surgery she suffered a relapse of breathing problems, and had to go back on the breathing support machine. Even with the breathing support, Piper still had very low blood oxygen levels, and subsequently required a blood transfusion.

“But after all of that, we were finally discharged – after 10 weeks – on Christmas day. So that was pretty special; it was a great Christmas present, that’s for sure.”

An emotional rollercoaster

As you can imagine, their experience while Piper was in hospital took a significant toll mentally, physically and emotionally. For Aiden, one significantly challenging aspect was that he had to continue working from Monday to Friday in Bunbury.

“For Aiden, it was mentally challenging and exhausting during work as his mind was always thinking about Piper and myself. He felt lonely coming home to an empty house each day… but he was lucky to have support from family and friends close to home.”

For Katelyn, she described that first moment of entering NICU – an environment they had never been exposed to before – particularly confronting. Entering an environment with scary, beeping machines and flashing numbers can be daunting at the best of times. Luckily, the staff at the hospital were just incredible.

“One of the nurses went through every little detail with me, such as what the target numbers were for each machine and what happens if things get ‘out of whack’. So that was really informative! They were there for everything we needed. They wanted us to hold our baby, and wanted us to be there as much as we wanted. They never made us feel like we couldn’t sit beside our baby’s bedside.”

How is Piper going now?

“She is really good. She is now 19 months old, and she’s running around, happy and healthy – so we are very lucky. Development wise, it did take her a little bit longer to reach certain milestones, such as rolling, sitting, crawling, walking; but, we were told to expect that considering she was born so premature. Once she caught up with most of the milestones she has just really taken off and she’s doing great.”

Extra check-ups

For the first year, Piper required 3-monthly checks with her paediatrician, monthly visits with her physiotherapist and a couple of checks with her eye specialist. Currently, Piper only requires annual check-ups.

“Being a premature baby, we always worried about her growth and development and it was hard not to ‘compare’ her to other babies the same age. But, it was actually reassuring for us to have these specialist check-ups and to be pointed in the right direction… Going to the follow-up appointments was a really good opportunity for us to ask the specialists any questions that we had about Piper’s development.”

We asked parents what tips they have for parents, family and friends of sick or newborn premature babies who require extra care and support. Read those tips here.

Also read the journey of Kylie, who shares with us her experiences of devastating heartbreaks and miraculous triumphs in having premature babies. Find her story here.

Discover support services and resources in Australia for parents, family members and caregivers of sick or premature babies. Find out more about available in-hospital and external services here.