I am STRONG, I am a NICU MUM

You never know how strong you are until being strong is the only choice you have. As the Mum of two premature babies, this quote has become my mantra. An overwhelming amount of endurance, courage and bravery is required to simply survive the rollercoaster ride of ups and downs that is the Neonatal Intensive Care Unit (NICU), and often the journey doesn’t end there. This article aims to highlight the often underestimated resilience of a baby born too soon and their families who fight tenaciously alongside them. 

My first son James arrived quickly and unexpectedly at 30 weeks gestation and spent five weeks in hospital. He is now four years old, full of life and completely caught up to his peers with 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 with complications including a rare blood disorder requiring weekly infusions, an incompetent cervix resulting in prolonged bed rest, pre-term labour, pre-eclampsia and finally HELLP syndrome, which ultimately led to our boys early arrival. While his nursery 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.

 

Among the 38 women was Cate Sherlock of Morphett Vale, who gave birth to her daughter Harper at 34 weeks gestation in June this year. 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. “They started talking about delivering my baby. I was so frightened. How could my baby possibly come now? I was in disbelief and shock,” Cate says. She spent 7 weeks in hospital on bed rest where she was only able to have one visitor. She spent this time researching about pre-term premature rupture of membranes and began advocating for her baby’s safety. Unfortunately, on the eve of 34 weeks, Cate’s placenta started to abrupt and she went into early labour, with Harper delivered via c-section the next morning weighing 2010 grams. “We spent 7 weeks in hospital. Noone can ever prepare you for leaving you baby in the neonatal unit. This was honestly the hardest time of my life.” Harper wasn’t able to coordinate her suck and swallowing reflex when she was born and had severe noisy breathing. It was discovered that she aspirates fluid into her lungs when she feeds and 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.  Cate wants others to know that “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 has been experiencing severe postnatal anxiety and PTSD due to the pregnancy and birth. 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 Pudney of Aberfoyle Park had a similar experience with her daughter Mabel, who was born at 29 weeks gestation in May this year. Mabel finally went home after 7 weeks in the neonatal unit, but was re-admitted to hospital for multiple investigations just 2 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,” says Naomi. Like Harper, 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. A simple cold can be life-threatening for these vulnerable babies and often ends in a hospital admission. “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!”

Jess Pate of Mitchell Park had quite a different experience after going into early labour at 23 weeks gestation with her first pregnancy. She was admitted to the birthing unit at the hospital and placed on strict bed rest, during which time the doctors discussed the possible outcomes of a baby born extremely premature at 23 weeks. 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. “I had a gut feeling that bubs was ok, so we decided to resuscitate at birth,” Jess said. Just 5 days later, her baby’s heart rate dropped dangerously low and Jess was rushed to theatre, where Ollie was born weighing just 650 grams. Ollie faced a plethora of complications during his 136 day stay in hospital, one of which was a bleed on his brain which turned the dead brain tissue into a cyst. “The cyst has since diminished; however we are unaware of any long term effects this may have and may not know for a few more years,” says Jess. Ollie also underwent two surgeries for bowel complications and overcame a severe infection. “My biggest challenge was my mental health. I bottled up all of my emotions, I 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 but I thankfully have the tools to help me overcome them.” 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,” says Jess.

Aldinga Beach Mum of two premature daughters, Danielle Walker, 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. Dani started bleeding on and off at just 5 weeks pregnant requiring repeated hospital stays. At 16 weeks she was diagnosed with placenta previa and at 20 weeks their baby was measuring extremely small with very little fluid around her. “We were told it was highly likely she would pass away in utero,” Dani says. At 23 weeks her family also had very difficult conversations surrounding their wishes should she need to be delivered. “We chose to keep her in utero, praying for any extra time for her to grow, even though the odds were against her.” But at 24 weeks and 2 days, there was nothing left to do but deliver Mahlia, and although she was extremely sick, her tenacious spirit was evident immediately. “We had an extremely turbulent NICU journey, that made our first NICU experience seem like a walk in the park! We nearly lost her on multiple occasions and Mahlia faced more challenges than anyone should ever have to endure,” says Dani. These challenges included severe infections, chronic lung disease, retinopathy of prematurity and multiple surgeries for bowel resections – one which occurred at just 9 days old in her isolette. After 130 days in NICU, Mahlia was finally able to go home on oxygen. “She was thriving and we were finally able to breathe, thinking the worse was behind us.” Unfortunately, after a marvellous 5 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 8 months old, facing the ongoing and lifelong challenges of short bowel syndrome. Despite their difficult journey, Dani radiates positivity, gratitude, and hope, saying “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 2 micropremmie girls who I love more than life itself.” Dani attended the recent photoshoot on her own, a courageous representation of the ongoing battles associated with prematurity and the relentless bravery required by these parents and their little fighters to simply survive each day. Sadly, some parents never get to take their baby home from NICU: a raw but real possible outcome of premature birth that we don’t often hear about.

I am STRONG, I am a NICU MUM.

A project presented by Miracle Mumma

Photographer: Jones & Jagger
Event styling: Found Collective Events
Flowers: StemHaus
Signage: Ovela Designs
Furniture/Props: Found Collective Events & Old Refinery

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"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 Pate