Not another bunch of flowers

It was a routine pregnancy for Nicole and her husband Barrett, their biggest focus at the time was choosing the right grout colour for their new bathroom.

At 38 weeks, Isla was ready to be born. Labour came quickly and Nicole and Barret were ready to meet her. And then their worst nightmare happened.

In the final stages of labour, the midwife discovered a true knot in Isla’s umbilical cord – a rare condition undetectable via ultrasound.

Isla was born not breathing, and their life changed forever. The doctors and nurses worked for 45 minutes to revive her and she was rushed to the NICU.

After six days in the NICU being cared for by her dedicated care team, the scans showed Isla had no brain function, so Nicole and Barrett made the difficult decision to turn off her life support.

Nicole remembers those six day as both the hardest and most precious of her life.

“Those six days were so hard, but so special. We spent them together as a family, sometimes laughing, sometimes crying – I didn’t know until then that grief and joy can co-exist,” Nicole says.

And so began Nicole’s journey of grief and healing. The first step returning home, without Isla in her arms.

“When you lose a child, you are so fragile – there is no comparison,” explains Nicole. “But over time, you find ways to manage and you do get through it.”

Seeking out support

Nicole says one of the hardest things was dealing with the complex feelings and contradicting thoughts, and the expectations of those around her.

She was sure Isla’s death would mean the end of her marriage – “are we going to get a divorce now?” she remembers asking her husband.

At the time of Isla’s death, five of her friends were pregnant along with her sister-in-law. In those early days, Nicole recalls that some close friends began to distance themselves, unable to cope.

“It’s hard to be strong enough to stand up for your own needs in the early days,” says Nicole. “It’s so lonely too, because unless you have lived it, you can’t understand.”

“I remember thinking: ‘not another bunch of flowers!’ as they too will die soon.”

“Even though you may have friends and family who want to help, I recommend that parents seek out support from other parents who have gone through this.”

“I visited the Red Nose office one day on a whim,” recalls Nicole. “It became my lifeline – seeing that it was possible to get through it and that there was hope on the other side.

“I initially went to the groups with my husband and then eventually I became a peer supporter myself.

“The groups are about connection and understanding. Seeing a peer supporter in those early days, gave me great hope – if they could go through the same things as me and come out the other side, there was hope for me too.

Rainbow babies

In the years since saying goodbye to Isla, Nicole and Barrett have gone on to have two healthy boys, bringing their family to six: three beautiful boys now aged 6, 3 and 2 months old, and one beautiful girl Isla.

“Our milestone was getting through birth with no complications,” says Nicole.

“Finding out that our rainbow baby was a boy was such an overall relief, because it made it even more clear for me that he didn’t replace her.

“I also remember being so worried that I wouldn’t love him, but it clicked straight away as soon as I held him,” says Nicole. “It was a relief, but I also felt guilty because I knew that if Isla had lived, he wouldn’t have existed.

“Now I see this as a special bond that Isla will always share with her little brothers.

“These are the complex feelings and emotions that co-exist inside all bereaved parents,” says Nicole.

Remembering Isla

Nicole says it’s important to find ways to remember your child, to say their name out loud whenever you feel like it, and to try not to let others hold you back from remembering your child because of their own uncomfortableness.

“For Isla, we celebrate her birthday with a cake but no candles. We sing happy birthday and have a picnic, just like other kids,” says Nicole.

“We were lucky in hospital in that our care team suggested creating memories and keepsakes. I still treasure them.

“We have our Isla monkey, photos in the stairway and on the fridge. We have a large photobook with all of the photos taken in hospital.

“In hospital, our care team helped us to create sense memories, whereby we can remember her through touch, sight and smell – the smell of the hand sanitiser used in the NICU conjures her memory for both Barrett and me.

“We also have Isla’s beach, which is where we scattered her ashes and visit as a family. We also talk about her with our other children, and talk about how she paints us a rainbow and controls the weather.

“And all of our kids’ names spell out ISLA (Isla, Sullivan, Liam and Aidan).”

Surviving and thriving

Nicole says that the acute stabbing pain of grief does become softer – you will be able to see colour again.

She says what helped her was:

• Connecting with other bereaved families through social media and the groups that Red Nose runs
• Being open and honest about how she was feeling – don’t sugar-coat it to make others feel less uncomfortable
• Committing to really communicating with her husband
• Having rituals to remember Isla and making time to practice them – and trying not to feel guilty if that becomes less with time.

Getting through special days like Mother’s Day

Nicole’s suggestions:

• Find ways to remember your child
• Create your own expectations, not what other people think
• Connect with other bereaved mums
• Read the book You are the Mother of all Mothers by Angela Miller
• Acknowledge your feelings and share them – your family aren’t mind-readers
• Understand that you’re still a mum, even if you have empty arms
• Keep your child’s memory alive in whatever shape or form means you are still mothering them even in death
• Expect the unexpected triggers and be gentle with yourself.

Nicole is a Red Nose Peer Supporter and member of our National Scientific Advisory Group representing bereaved parents on this important group. She is also the founder of ISLA grief & loss, providing bereavement education to maternity healthcare professionals.

Do you need support? We’re here for you. Call our 24/7 Support Line on 1300 308 307, to talk to someone who understands.

Last reviewed: 17/4/24