Mother of all lil battlers — you are not alone as Adelaide mums share their stories on World Prematurity Day
Every premature baby’s journey is unique — although not uncommon. One in 10 Aussie bubs are born too soon. On World Prematurity Day, Adelaide mum Amy Purling wants parents to know they are not alone.
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“There ain’t no strong like premmie strong” – it’s a new proverb Amy Purling has come to embrace and celebrate.
The 30-year-old mum of two premature sons has journeyed twice to reach this point of insight.
“As the parent of a premature baby you feel afraid, isolated, vulnerable, and guilty – it’s a rollercoaster ride of ups and down, of overwhelming shock and grief,” says Amy.
“I have come to learn, however, that premature families are among the strongest families I know.
“Premature babies may be the littlest, but they are also the toughest newborns, they never give up and they are resilient. They beat the odds – just like their parents.”
Amy’s firstborn son, James, arrived at 30 weeks gestation in February 2016 and spent five weeks in hospital.
Her second child, Jack, was born in May this year at 34 weeks.
A rare blood disorder, incompetent cervix and pre-eclampsia were the raft of pregnancy complications Amy grappled with.
Both boys required platelet transfusions after birth. Jack has battled surgery for a bilateral hernia, chest infections, pneumonia, continuing breathing difficulties and a floppy airway causing him to aspirate milk into his lungs. He is now fed via a tube.
“I have spent countless hours beside a humidicrib watching my children fight to survive and then having to leave empty-handed with the painful possibility that you could lose your baby at any second,” the Mt Barker mum says.
Amy says as the days and weeks passed, she began to find perspective.
“You slowly come to realise the undeniable strength and determination of your baby born too soon,” she says. “You grow a support network of nurses, doctors and premmie families who all become your real-life superheroes. Although you are afraid every single day, you know you are part of something truly special.”
Amy wants to share her tale of survival – and those of others – to inspire, encourage and empower the parents of premature babies currently feeling worried and alone across SA.
She has assembled 13 “fierce warrior mammas” and their premature babies from all over Adelaide to debunk myths and shine a light on the often hidden and unknown experience of prematurity.
“One-in-10 babies are born too soon in Australia and premature birth remains the leading cause of death in children under five – it is more common than you think,” she says.
SA Health data shows about 14 per cent, or 646, of all babies were born premature at the Women’s and Children’s Hospital last year. Last month the women and their children gathered in Kuipto Forest, south of Adelaide, to help mark World Prematurity Day, on Sunday.
It was the first time the women met face-to-face following social media contact via Amy’s Miracle Mumma support network for parents of premature babies in SA – many of whom have spent time at the WCH’s Neonatal Intensive Care Unit.
Among the 13 was Tillie Tink, from Littelhampton, who was nearly 23 weeks’ pregnant when her car collided with a bus at 110km/h.
Her waters broke on impact and preterm labour immediately ensued.
Medication halted labour and antibiotics staved off numerous infections. The mother-of-three children under five was confined to bed for 10 weeks to keep her baby safe in the womb for as long as she could.
When contractions began a second time at 33 weeks, Tillie’s scar from previous C-section births ruptured and she was rushed to emergency.
Poppy was born “completely blue and unable to breath on her own”.
“Being the parent of a premmie baby is one of the most mentally, emotionally, physically and financially difficult experiences that I have endured as a parent and a journey that I wouldn’t wish upon my worst enemy,” says Tillie.
“Looking at your baby through a plastic box, a baby that you grew in your womb, you felt move and kick, yet you now cannot touch, is heart shattering.
“Being unable to hold and comfort my baby when she was distressed because she was so sick goes against every natural motherly instinct embedded in me as a human.”
Poppy spent four months in the WCH. She is now 10 months, is on continuous oxygen and has numerous specialist appointments each week. “Despite everything she has been through she is doing incredibly well now and thriving being at home with her siblings Charlie, Archie and Hettie,” Tillie says. Emily Farquhar, from Christies Beach, had a very different experience: “My pregnancy was a walk in the park – I felt great – I had no morning sickness and joked about having thousands of kids if it was going to be this easy!”
At 24 weeks and five days in November last year, early labour disrupted Emily’s stress-free pregnancy. Her placenta had detached.
Her baby, Hudson, was born six hours after presenting at hospital – he is among the youngest born of this brave group of babies pictured. Emily and her partner, Matt White, had to wait three weeks after Hudson was born to hold him. “There were many challenges,” she says.
“Not coming home with your baby for four months. Saying those goodbyes, or as I changed them to ‘see you tomorrows’, because goodbye felt awful and they never got any easier! I think what I struggled with the most was the unknown.
“Not knowing what you would walk into when you entered the unit and turned that corner into your bay.
“Would there be a million people standing around your baby because they were sick or struggling?
“Would there be a happy nurse excited to tell you a milestone that your baby hit while you weren’t there?
“Would it be the same as yesterday, for the fifth time in a row, so you felt as though you had made no progress forever?
“Although we have left the unit, we still experience the unknowns, but they have shifted to the long term.”
At Seacliff, Rachel Southwell, counts her blessings daily for Miles.
He arrived unexpectedly at 28 weeks in April this year and required lifesaving surgery shortly after birth to join his oesophagus together. Miles spent three months in hospital and is now at home on oxygen 24/7.
Rachel says Miles would not be here without the dedicated medical team at the Flinders Medical Centre and WCH and the premmie families battling similar odds by their side.
“Having a premature baby gives you faith in humanity,” says Rachel.
“It reminds you how strong and resilient you are,” she says.
“It shows you that you can love more than ever before and it gives you a real life miracle. Not many people can say they have witnessed a miracle. We can.”
HOW TO STAY PREMMIE STRONG
TRUE HEROES: Premature babies are in the best care. The doctors, nurses, midwives and health professionals that work in the Neonatal Intensive Care Unit are true heroes. Each day they perform miracles. They are guardian angels in disguise and they treat each and every baby like their own. They become your family, and without them the world would be a much smaller place.
THEY ARE NOT ALONE: Premature babies are not uncommon. Each year 15 million babies worldwide are born too soon, and one million of those sadly lose their fight for life. It is more common than you think, it is on the rise and it can happen to anyone. Although I was absolutely terrified as I walked into NICU for the first time, I took comfort knowing that James and Jack were surrounded by a team of little fighters.
EVERY WEEK COUNTS: Premature babies miss out on vital developmental time in-utero. A baby born too soon does not experience the final weeks of pregnancy which are essential to develop their major organs such as the brain, lungs and liver, and to acquire fat to maintain body temperature. Consequently, there is a high risk of disability and even death the earlier the baby is born. Hence the reason I now cringe every time I hear a pregnant mumma saying “I wish this baby would just get out already”. Every week during pregnancy counts.
TRY NOT TO COMPARE: Premature babies are not just “small newborns”. When a baby arrives early, they can no longer rely on the womb to survive. Their energy is completely exhausted by the simple things we take for granted each day such as breathing, digesting, maintaining their temperature and responding to light, sound and touch. Their world is very different to that of a full-term newborn and, for this reason, they’ll have some catching up to do.
YOU CAN HELP: Premature babies need our help. They often require blood transfusions to support them through their early days, and just one hour of your time can bring hope to four babies. James required lifesaving platelet transfusions just hours after he was born, and if it wasn’t for one kind lady in Sydney who had his rare blood type, we might not have been so lucky.
HUG THEM TIGHT: Babies are both fragile and strong at the same time. A baby born at 24 weeks gestation can weigh close to just 500g at birth. They are vulnerable, they don’t have an ounce of fat and they could fit in your hand. But their fight is undeniable. They are the embodiment of perseverance and strength, which cannot be measured by weight, length or gestational age. Unfortunately, some of these babies are not equipped to survive outside of the womb and lose their fight for life. Whatever you are doing and wherever you are today, I ask you to hug your loved ones tight, and remember those families who are unable to hug their premature babies right now.