You never know how strong you are until being strong is the only choice you have.
As a NICU mum of two premature babies, this quote has become my mantra.
It requires an overwhelming amount of endurance, courage, and bravery to simply survive the rollercoaster ride of ups and downs that is the Neonatal Intensive Care Unit (NICU). Often the journey doesn’t end there.
One in ten is a NICU mum
One in 10 babies is born too soon. Which means one in 10 families goes through this roller coaster ride.
Today, on World Prematurity Day, we celebrate these families, the resilience of a baby born too soon and their parents who fight tenaciously alongside them.
Here are five NICU mums and their babies, read their story and celebrate the resilience and strength they have endured with their little ones. And read on below to see what happened when forty NICU mums got together to celebrate just how far their little ones have come, in preparation for World Prematurity Day.
My story: James and Jack
My first son James arrived quickly and unexpectedly at 30 weeks gestation. He spent five weeks in hospital.
He is now four years old, full of life, and has completely caught up to his peers. There are no long-term health effects from his premature arrival.
My second son Jack was born at 34 weeks gestation after a closely monitored high-risk pregnancy. While his NICU stay was shorter, Jack faces ongoing health challenges and at 18 months old is still fed via a feeding tube for severe dysphagia (swallowing difficulties).
Jack has spent most of his life in and out of hospital undergoing countless investigations and procedures, resulting in multiple diagnoses including airway abnormalities and chronic lung damage.
Despite this, his smile shines brighter than the sun and his cheeky personality is infectious.
Premature babies beat the odds every single day – they may be tiny but their fight is mighty. While my journey to motherhood wasn’t easy, my boys are my reminder to not only be thankful every single day, but to also be brave.”
My experience opened my eyes to a world I knew nothing about, but one that I believe everyone should be aware of.
15 million babies per year are born too soon. Pre-term birth complications are the leading cause of death of children under five.
It is more common than you think, it is on the rise and it can happen to any mum, including NICU mum Cate Sherlock, of Morphett Vale.
Cate’s story: Harper
After a pregnancy complicated by bleeding, Covid-19 and multiple tests due to ‘high risk’ antenatal screening, Cate’s waters broke at just 26 weeks.
Cate spent seven weeks in hospital on bed rest. In June Harper was delivered via c-section at 34 weeks weighing 2010 grams.
No one can ever prepare you for leaving you baby in the neonatal unit. This was honestly the hardest time of my life.” – Cate
Harper spent seven weeks in hospital and wasn’t able to coordinate her suck and swallowing reflexes when she was born. She is now still fed via a feeding tube at 4 months old, with ongoing investigations, hospital admissions, and outpatient appointments becoming a ‘normal’ part of her life.
Despite these complications, Harper is absolutely divine and Cate is grateful every day for her little blessing.
It’s ok to feel completely out of control or like you’re falling apart. It is ok to challenge the team and ask lots of questions. You are an expert in your child’s world and you are their voice. Trust your gut and intuition. And be kind to yourself.” – Cate
Due to the pregnancy and birth, Cate experienced severe postnatal anxiety and PTSD. She is now seeing a psychologist who is a specialist in perinatal mental health and encourages everyone to reach out for support and to surround themselves with people they can trust.
Naomi’s story: Mabel
Naomi Pudney of Aberfoyle Park had a similar experience with her daughter Mabel, who was born at 29 weeks gestation in May.
Mabel went home after seven weeks in the neonatal unit, but was re-admitted to hospital just two weeks later after she stopped breathing and turned blue at home.
As the Mum of a premature baby you will feel ripped off. That you didn’t get a whole pregnancy, that you can’t take your new baby home with you, that you can’t hold and feed your baby whenever you like or have those ‘typical’ new baby days at home. But you are stronger that you could ever imagine.” – Naomi
Mabel faces ongoing health challenges and Naomi says their days are filled with appointments and the very real fear of visitors sharing their germs and making Mabel unwell.
We are only just starting to feel like she is safe and the emotions of not being able to feed her orally are becoming our normal. I find it so clinical, but we finally have a content, smiling and thriving baby – we are totally in love!” – Naomi
Jess’ story: Ollie
Jess Pate of Mitchell Park had quite a different experience, going into early labour at 23 weeks gestation.
She was admitted to the birthing unit at the hospital and placed on strict bed rest. Jess and her husband James were faced with the decision to either resuscitate their baby at birth or provide comfort care and let their baby pass soon after birth. They chose to resuscitate at birth.
Just five days later, at 24 weeks gestation, Jess’s baby’s heart rate dropped dangerously low and she was rushed to theatre.
Ollie was born weighing just 650 grams.
The little fighter faced a plethora of complications during his 136-day stay in hospital. Ollie underwent two surgeries for bowel complications, overcame a severe infection and had a bleed on his brain which turned the dead brain tissue into a cyst.
My biggest challenge was my mental health. I bottled up all of my emotions and went into autopilot mode: sleep, eat, go to hospital, repeat.
For the first 5 months of his life my fragile little baby had a whole staff of nurses and doctors on hand 24/7 who told me what to do and when. They were incredible, and I owe my baby’s life to them.
But suddenly it was home time and felt like I was nowhere near good enough for him. I was diagnosed with postnatal anxiety and depression and even now a year later, I still feel those feelings creeping up on me. Thankfully I have the tools to help me overcome them.” – Jess
Ollie is now 16 months old and has struggled with delays in fine and gross motor skills but is quickly catching up.
He is a very happy, social, energetic and bright toddler with so much determination – a true little warrior.” – Jess
Dani’s story: Lilah and Mahlia
Danielle Walker, from Aldinga Beach, has witnessed miracles on a daily basis. Her and husband Roger’s first daughter, Lilah, was born five years ago at 27 weeks and spent 81 days in hospital.
In February this year, their second daughter Mahlia was born at 24 weeks weighing just 420g after a pregnancy full of complications.
We nearly lost her on multiple occasions and Mahlia faced more challenges than anyone should ever have to endure.” – Dani
These challenges included severe infections, chronic lung disease, retinopathy of prematurity and multiple surgeries for bowel resections.
After 130 days in NICU, Mahlia was finally able to go home on oxygen.
Unfortunately, after a marvelous five weeks at home, Mahlia ended up back in hospital with another bowel obstruction requiring emergency surgery and was once again fighting for her life in intensive care.
Mahlia is still extremely unwell in hospital at eight months old, facing the ongoing and lifelong challenges of short bowel syndrome. Despite their difficult journey, Dani radiates positivity, gratitude, and hope.
Love conquers all. The road ahead is tough and it takes a village of support to keep your head above water but there is no shame in asking for help. I am the proud Mumma of two micropremmie girls who I love more than life itself.” – Dani
NICU mums, you’re not alone
While as a premmie community each of our journeys is individually diverse and unique, we are united by a mutual understanding of the challenges we are forced to face and the strength required to overcome them.
Last month, our tribe of fierce warrior NICU mums and our premature babies got together for a photoshoot. Each mother and baby represents the village of others who have been there before, shining a light on the often hidden and unknown experience of prematurity which continues long after you leave hospital.
World Prematurity Day
Today, on World Prematurity Day, we stand united, to embrace, celebrate, and raise awareness of the one in 10 babies born too soon.
As a Mum of a premature baby, you may be faced with the most difficult decisions and the most traumatic experiences of your life.
But on the other side of the NICU, when you have your bundle of joy home where they truly belong, it’s all worth it and you’d do it all over again a million times just for them.” – Jess
Our babies are our reminders to be grateful every single day.
Proof that miracles exist. And while my experience is individually unique, I am forever a part of something truly special. A community built on strength, pride, solidarity, and love.
Today, I move forward with my head held high and a strength that cannot be denied; I have been through the storm and survived.
I am STRONG, I am a NICU MUM.”
To join other NICU mums, please check out: www.miraclemumma.com.au
Additional support websites
What to read next
- I Watched My Baby Fight for His Life Inside NICU
- My Son Spent 6 Weeks in NICU and It Changed Me
- The Genius Invention That Could Benefit Millions of Premature Babies