Stories of women and families who have experienced preterm and early term birth
Jacqueline-Rose was born at 36 weeks, weighing 2.68kg.
Born 15 weeks early, Ava weighed little more than a tub of butter when she came into the world.
Her tiny hands were no bigger than her parents’ wedding rings and her fragile little body could fit in the palm of their hands. Born weighing 580 grams, she was small yet mighty enough to tackle the complex challenges a marathon 101-day stay in the Neonatal Intensive Care Unit would bring for the brave micro preemie.
Ava’s sudden introduction to the world was a life-and-death decision made by the world-class team of experts at Perth’s King Edward Memorial Hospital. Up until three days prior to her hurried delivery via emergency classical caesarean section under a general anaesthetic, her mum Yasmine Phillips had experienced a smooth pregnancy where the expected side effects like morning sickness brought much comfort.
But a sudden onset of excruciating rib pain that would come and go, and bouts of vomiting, prompted Yasmine to visit a Geraldton emergency department while visiting relatives for Christmas. Doctors hoped it was merely festive food poisoning but warned they were preparing for a worst-case scenario of HELLP Syndrome, an uncommon and severe form of pre-eclampsia that can lead to life-threatening complications for both mother and baby.
For the safety of the unborn baby and mother, the pair were flown to Perth via the Royal Flying Doctor Service and transferred to KEMH where Yasmine’s condition quickly declined, a HELLP Syndrome diagnosis was confirmed and a life-saving decision was made to deliver Ava.
“Those early days and weeks in the NICU were some of the most terrifying moments you can imagine,” Yasmine said. “There was so much uncertainty and fear, and many worrying thoughts as we watched Ava breathing through a ventilator, covered in wires and confined to an incubator.”
Ava is one of more than 26,000 premature babies born in Australia every year with one in every twelve pregnancies ending too early. Worldwide, more than 13.4 million babies are born preterm each year.
“During Ava’s three-and-a-half months in the NICU, it became like a second home to us and we felt so blessed to have had such an amazing team of people caring for our daughter who really celebrated every milestone and felt deeply every low,” Phillips said.
Chair of the Australian Preterm Birth Prevention Alliance, Professor John Newnham explains that preterm birth is the leading cause of death and disability in children up to five years of age in the developed world.
“Preterm birth is defined as birth before 37 weeks of pregnancy whilst early term birth is the 14-day period between 37 and 39 weeks of pregnancy,” he said.
In March of this year the Australian Government announced it was continuing its investment in Australia’s world-first national program to safely reduce rates of early birth with $5.3 million to expand the Every Week Counts National Preterm Birth Prevention Collaborative.
“This program, which has been adopted in maternity hospitals all over Australia, brings together health professionals, First Nations leaders, quality improvement experts and those with a lived experience, to improve pregnancy outcomes for more women across the country,” Professor Newnham said.
Driven by the potentially life-long consequences of prematurity and HELLP Syndrome, Yasmine has joined the effort to help raise awareness of preterm birth.
Almost four years after the early arrival of Ava, she welcomed another little girl into the world. Sage spent a week in the NICU in the bed right next to where Ava spent the first few months of her life.
Due to the complications from her first pregnancy, doctors deemed it safest for Yasmine’s second baby girl to be delivered at 37 weeks. But even with her experience, she stresses that nothing quite prepares you for a newborn baby being taken away to the NICU while you are stuck in recovery from a caesarean section.
“When we made it to our planned delivery date at 37 weeks, I thought everything had gone to plan this time around so I took Sage’s transfer to the NICU really hard,” Yasmine said. “After Ava’s arrival at 25 weeks, I was so relieved with every week we made it past that point that when we had made it to 37 weeks safely, I was so distressed to see doctors now so concerned about my second baby.
“Whether a baby spends one day, a week or 15 weeks in the NICU, there is an all-consuming worry that will not rest until everyone is hopefully home safe and under the one roof together.”
As Mikaela and Sam Dunn hit the halfway mark in their first pregnancy, neither one of them could have imagined that in just a few short days their world would be turned upside down.
Classed as a “perfect candidate” to carry to full-term, Mikaela was enjoying a problem free pregnancy up until her 20-week scan.
The sonographer told Mikaela she had a very healthy baby and normal looking pregnancy. She was also informed that she had a short cervix.
“Those words ‘short cervix’ meant nothing to me. Was supposed to be short? I had no idea,” Mikaela recalls.
“I was told was told it can be very normal, was prescribed progesterone would be followed up in a weeks’ time.”
Thrown into a confusing world of statistics, medical jargon, and google results of high-risk pregnancies, Mikaela’s mind was rightly in overdrive. Was it even possible to have a baby so early? What is progesterone?
A few days later, one day shy of that all-important check in appointment to see how her cervix was doing, Mikaela remembers experiencing some uncomfortable pain.
“I was reassured that it most likely was just round ligament pain, but it was best to come in and get checked due to my short cervix diagnosis.
“As we were preparing to leave, I went to the bathroom and passed what I soon learned was my mucus plug.”
There in her driveway, at a mere 20+6 weeks, Mikaela’s waters broke.
“I knew this wasn’t good. Although I had learned you could have a baby in your second trimester, I knew 20 weeks just wasn’t feasible. I was sure I was losing my baby.
“At the hospital they rushed me through to the birthing suite and I was told that my baby would be arriving within 48 hours and to take a bedpan with me to the bathroom, as it could be the baby. I was crushed.”
A seemingly endless procession of examinations and scans continued past the 48-hour mark, and Mikaela’s baby was miraculously still hanging tight. A once clear outline on the ultrasound machine was now difficult to make out with the lack of amniotic fluid surrounding him.
“But his heart was still beating. That was the glimmer of hope I desperately hung onto,” she remembers.
“My new goal was now to make it to 22+6 weeks so I could have the steroid injections to rapidly mature his lungs and other organs.”
A few critical weeks later after experiencing contractions, baby Leonardo was born at 24 weeks weighing a mere 675 grams.
“He did not come out breathing, and it took a second doctor to even be able to get the breathing tube down his tiny windpipe to give him a fighting chance,” she said.
Leonardo was whisked away to the NICU immediately after and it would be several hours later before Mikaela and Sam would be able to meet their son for the first time.
In total, Leonardo would spend 104 days in the neonatal intensive care unit and special care nursery – on high oxygen support for almost the entirety of his stay.
“He came home just before his due date which was an incredibly special day for everyone.
Leonardo hasn’t had any ongoing health conditions, has met all corrected his milestones, and he continues to amaze us every single day.
“He is a literal little miracle. But we do truly know that we were one of the lucky ones.”
In 2023, Leonardo would become a big brother to Rafael, born early term at 37 weeks. The pregnancy was not without its own complications.
“With Rafael I did have to advocate for myself to be tested for leaking amniotic fluid, which was indeed positive (leaking), and the reason I was admitted and induced. This was after feeling empowered enough to advocate for myself after everything that happened with Leonardo.”
Shaped by her lived experience of extreme preterm birth, Mikaela has played a key part in the Every Week Counts National Preterm Birth Program as a consumer with Royal Hobart Hospital.
“I have already spoken to so many families who have also had a preterm baby. It’s so rewarding to be that little glimmer of hope for families or even just a sounding board as someone who has gone through it,” she said.
“I know that’s the very thing I was so desperately seeking when I was going through it, I really hope I can continue to be that person for any other families who need it.”
Our lives were thrown into chaos when our fourth baby arrived at just 25 weeks gestation, weighing 865g. Sent to King Edward Memorial Hospital hundreds of kilometres from our home in Australind, just days before his birth, our family was suddenly torn apart and that’s the way it would stay for almost 4 months.
Adison had a long journey through NICU complicated by chronic lung disease, infection, brain bleed, hernia and other general prem related issues. It took a long time, weeks, for the Doctors to decide he was stable. It was 18 long days before his first cuddle and months before he met his siblings.
As a Mum to three other children it was heart-breaking to have to choose between my sick baby in hospital and my 3 healthy children at home in Australind with their Dad, who was still working. This is no choice a parent should be faced with.
Adison came home 2 days before his due date having made remarkable progress at the very end of his 100 day NICU stay.
Around 6 weeks after coming home, it was revealed that Adison was in the preliminary stages of heart failure. He had left the NICU with a patent ductus arteriosis (PDA) which had now caused pulmonary hypertension. Still a tiny 4.5kg, Adison was admitted to PMH for a thoracotomy and PDA ligation. Adison’s Dad and our other children were home in Australind and again I was faced with this confronting situation alone.
Adison came home on a hospital apnoea monitor and nocturnal oxygen that continued until he was 18 months old. Damage had been caused to his lungs and he required additional support whilst sleeping. He was also having regular apnoea due to a premature central nervous system.
In spite of the labels that follow Adison around the medical world, chronic lung disease, cerebral palsy, hypotonia, verbal & oral dyspraxia, dysarthria, sensory processing disorder, at 11 years of age, he is an amazing, bright, confident young man.
Amber Bates
From just six weeks into her pregnancy, second-time mum to- be Jenny Bulloch knew she was in for a bumpy ride.
With three miscarriage scares and constant bleeding from 15 weeks, Jenny struggled with constant pain, lack of sleep and plenty of travel between her hometown of Carnamah, about 300km from Perth, and the nearest hospital. Eventually, Jenny was admitted to King Edward Memorial Hospital; Western Australia’s sole tertiary-level perinatal centre. With husband Adam and two-year-old son Luke in tow, Jenny and her family adjusted to life away from home, which would extend much longer after her impending birth.
On September 10, 2009, Jenny experienced a very painful contraction while sitting in the waiting room at the hospital with other expectant mothers. At just 24 weeks and five day’s gestation, she knew that it was all happening far too early. “On the way to a scheduled ultrasound my uterus just went into a spasm. I was told it contracted and then never went back down,” she said.
Following an emergency caesarean section, Hayley was born and immediately taken to the intensive care unit. “I got a photo that night and my husband left with her and then I didn’t get to see her until the next day,” Jenny said.
The next day, and a further 97 days after that, would be some of the toughest for baby Hayley.
Born at just 740g, she struggled with all the usual problems premature babies face, including her weight, feeding, retinopathy, blood transfusions and viral issues. “She looked awful. She looked like an alien,” Jenny said. “The first few photos you put on Facebook of your baby, I couldn’t put them up because her skin was so see-through and she was in bubble wrap. I couldn’t hold her until at least five days, or maybe a week after she was born because she was too delicate.”
After nearly 100 days in hospital, the Bulloch family were finally able to return home to their normal life in the country with their two healthy children.
Just a few years later, the Bulloch family would receive the surprising news that they would soon become five, with the impending birth of baby Sophie. “I always had an awful, negative feeling ending on that pregnancy, so I felt having Sophie helped me. It was good therapy” she said.
Fast-forward to today and Hayley is like any other 12 year-old running around the playground. “She is perfect now, so feisty and stubborn and all the rest. We are very lucky,” Jenny said.
An emergency induction. First time mother. Global pandemic. The perfect storm appeared to unfold for Skye Leahy and her husband Sean for their birth of their daughter, Anastasia in 2020.
In September of 2020, Skye and Sean relocated from Adelaide to Western Australian for Sean’s work with the Royal Australian Navy.
Skye was 27 weeks pregnant at the time, and in-line with COVID-19 protocols, the couple were required to quarantine for two weeks on arrival.
“A few days into the quarantine I began to experience headaches and nausea,” Skye recalls.
The health team at the hotel decided it was best for Skye to be transported to King Edward Memorial Hospital for further examination.
“The doctors informed me that I had high blood pressure and I was sent back to quarantine with medication and instructions for daily health checks,” Skye said.
After quarantine, Skye’s care was continued at King Eddies, with fortnightly checks.
“My 30-week check passed with no problems. At my 32-week check I was showing signs of swelling in my hands, feet and face. After testing, I was given a diagnosis of pre-eclampsia and admitted to hospital,” she said.
Just five days later Skye’s health had declined to a point where she was told she needed to be induced.
“It was a truly terrifying time. We were first time parents, in the middle of a pandemic, on the opposite side of the country to our support system and family. It was isolating, lonely and I wasn’t even at 33 weeks yet,” Skye remembers.
“I remember being told to wait, and not push yet because the NICU resus team wasn’t in the room yet, and they weren’t sure if she would breathe on her own after birth.”
In the blink of an eye Anastasia was born weighing just 1450g.
“After she was born, I remember hearing her cry and immediately bursting in to tears of relief, knowing she was alive and breathing. Sean went with Anastasia and the team down to the NICU.”
Joy and immense relief were palpable for Skye and Sean although they knew that there was a long road ahead.
Anastasia would spend a total of 41 days in the NICU and Special Care Nursery before being able to head home.
Initially Anastasia would require breathing support and was tube fed as she struggled to coordinate her swallowing until 36 weeks. She would also experience a Grade 1 brain bleed after birth and was diagnosed with an infantile hemangioma in the area around her parotid gland.
At two years old, she was diagnosed with a Global Development Delay, and with further assessment was diagnosed as being Level 3 Autistic.
“Anastasia is still non-verbal and struggles with regulation, sensory issues and eating, but is otherwise a very happy and active child,” Skye explains.
“She has just started pre-school here in Canberra and is enjoying every day of school which is a huge milestone for her and the family.”
In 2023, Anastasia would be become a big sister as Skye and Sean welcomed Gabriella, born at term.
Skye’s pregnancy care was once again split between two states, as the family were relocated from Adelaide to Canberra for Sean’s career once again.
“At 12 weeks I was started on low-dose aspirin as a preventative measure. When we got to Canberra, I was 16 weeks pregnant and was taken under the maternity care of the local hospital quickly,” she said.
“I had more regular appointments to monitor my blood pressure and was transferred to a high-care team after a diagnosis of gestational diabetes requiring insulin for control. Luckily, my blood pressure remained stable, and I carried to 38+1, when I was induced.”
Sharing her story isn’t always easy for Skye but her motivation to do so is unwavering.
“I want to help raise awareness around preterm birth because I know how scary and isolating it can be, and if I can help one person hold onto hope and feel a little less alone, then I feel like I should pay that forward,” she said.
“It is one of the scariest things any parent can face, and hearing stories from those who have walked the path before you can be a comfort when its 3am and you’re pumping milk looking at photos of the baby you wish you were holding in that moment.”
Sarra Box’s twins, Hunter and Heath were born 15 weeks too soon. With more than 26,000 preterm births in Australia each year, Sara’s story of heartbreak and loss is shared by many others.
Delivered at 25 weeks, Hunter was born at just 1015 grams and went on to spend 97 days in the Neonatal Intensive Care Unit (NICU) living day-to-day. Sadly, Heath was delivered stillborn due to severe complications caused by enlarged ventricles in the brain.
After three attempts at IVF, Sarra and Jarrad were thrilled to hear they had finally fallen pregnant. Following a few early struggles, things went relatively smoothly for Sarra up until her 20 week scan.
“At our scan we were told that Heath had enlarged ventricles in the brain. After another scan at King Edward Memorial Hospital (KEMH), the severity of the ventricle sizes on both sides of the brain was explained, as too was the poor outcome if we went to term with Heath,” Sarra said.
“We heavy heartedly chose to terminate our baby boy. The risks were explained to us in regard to Hunter and the possibility of early arrival; however the likelihood was slim.”
Four weeks later, Sarra was advised to head back to KEMH after experiencing constant stomach pain and gave birth via emergency C-Section on 30 January.
“The whole experience, of having Hunter overcome the odds and Heath being born sleeping, is still very fresh and some days are a lot harder than others,” she explains.
“I think as we approach Christmas and the boy’s birthday, I find myself thinking about them both a lot more. Some days are a whole lot harder than others, I think we just look at Hunter and feel blessed that he made it through his NICU journey and is doing so well and we are so grateful for that.”
In reflecting on her own journey, Sarra has become an advocate for raising awareness of the risks of preterm birth.
“I can honestly say that preterm birth hadn’t once crossed my mind while we went through our journey to conceive and even while I was pregnant. I was more fixated on the fact of miscarriage that I didn’t even consider early birth,” she said.
“Supporting the research, education and community awareness efforts of the Alliance is critical to preventing preterm births. The longer our babies stay in, the healthier they are and the less support they need in other areas of life.”
Sarra urges others with similar experiences to be open and share feelings of frustrations, guilt and fear.
“I’m still learning to open up, but I’ve found that keeping it in isn’t helpful.”
Jessica Hatton was understandably fearful when she had to unexpectedly deliver her daughter Charlotte in July of 2021 at just 28 weeks.
After a relatively uncomplicated pregnancy, the Mandurah local had noticed reduced movements in the days prior to her emergency delivery. Monitoring showed a heartbeat, yet Jess still couldn’t feel her usual movements.
A myriad of tests and checks indicated potential preeclampsia – a serious condition of pregnancy, usually characterised by high blood pressure and severe swelling.
“I had been to the obstetrician five days prior and nothing had been flagged. I had no symptoms of preeclampsia at all,” she said.
“Luckily, I was familiar with the symptoms of preeclampsia as one of my best friends had it three times, resulting in her babies being born early so had been mindful of any similar symptoms.”
Bloods, another urine sample and ultrasound determined she had preeclampsia despite the lack of noticeable symptoms The scan showed disrupted flow to the placenta.
“King Edward Memorial Hospital was phoned, and they wanted me to come in immediately by ambulance.
“At that point, I wasn’t thinking about preterm birth and was still a bit in denial – thinking we would get checked and make it to the birth class we had booked for the next day!”
Continued monitoring, a dose of steroids, and another ultrasound all happened in quick succession. Doctors reported Jess would have to stay in hospital on strict bedrest and would likely give birth within a few weeks.
45 minutes later things would drastically change.
Jessica’s doctor asked her to call her husband as the baby was likely going to have to be delivered sooner rather than later as she was starting show signs of declining.
“10 minutes after making the call to Troy, the doctor returned and told me that the baby was in distress, and they would have to deliver via emergency caesarean section asap,” she recalls.
“Despite the extreme stress of the situation, I felt I was really safe hands with the doctors and nurses at King Eddies. Their professionalism and clear information they were giving me was helping me stay as calm as possible. Although I was preparing myself mentally for the possibility that Troy wouldn’t make it in time for the birth given the distance he had to travel.”
Jess was rushed to theatre and was able to remain awake for the surgery. Thankfully Troy arrived with minutes to spare before delivery.
In the blink of an eye Charlotte was born weighing just 1005g and measuring 37.5cm.
Joy and immense relief were palpable for Jess and Troy especially on speaking with their doctor after the birth.
“She told us that if we did not seek medical attention when we did, the outcome may have been different as the placenta showed it likely had been impacted for several weeks.”
Despite her early birth, Charlotte showed all positive signs medically, and was put on CPAP for 1 week, before moving to high flow. At 32 weeks, she would be strong enough to breath on her own.
“She was given a diagnosis of Stage One Retinopathy of Prematurity which, as of our last scan/check, had cleared completely,” she said.
Reflecting on their journey and challenges faced, Jess understands all too well the emotional rollercoaster for preemie families.
“Being in the NICU is an experience you cannot comprehend until you live it – leaving the hospital without your baby is unnatural. It’s a horrible feeling and NICU families do it daily,” she said.
“Beyond the overall NICU experience being so tough and emotional, the hardest thing was that we lived an hour away but were still classed as ‘metro’ so had to drive up and back each day. I couldn’t drive so we were very thankful that my husband was able to have a significant time off work.”
After a lengthy 51-day NICU stay across both King Edward Memorial Hospital and Fiona Stanley Hospitals, Charlotte would be allowed to go home.
Now a very cheeky and determined 3-year-old, Charlotte has been discharged from the KEMH follow-up program and is kicking her development goals with gusto.
“We feel very grateful to have had such good outcomes, and while there have definitely been challenges and hard times along the way, we have our beautiful girl home healthy with us. That is the best outcome we could have ever asked for.
“I have been really passionate about raising awareness of preterm birth. If our story can help other families notice signs and symptoms and get checked early, I hope it means that it can help them have better outcomes.”
When Catherine and Mathew Korteweg first began planning their son’s fourth birthday, they didn’t think Beau becoming a big brother would be a belated present just days later.
Despite enjoying a textbook pregnancy, it was the recommendation of an experienced midwife that Catherine’s pregnancy be observed more closely by an obstetrician due to inflammatory arthritis and a pre-existing placenta issue.
“I was on a pretty standard care plan throughout the pregnancy, taking low dose aspirin early on as a mitigating strategy for the medication I was on. No concerns had been flagged that needed investigation at my initial scans.”
It wasn’t until her 28 week scan that a sonographer saw that Catherine’s cervix was short at 1.2cm and had started to funnel. What followed was a whirlwind week for the Korteweg family.
“As we are rural, she called in my midwife straight away who phoned the obstetrics team and sent me to be checked out. At the time I thought I was going to just have an overnight stay, examined, and sent home.”
The obstetrician explained to Catherine that she was at very high risk of preterm labour.
“If I went into labour early, and an ambulance took too long, things wouldn’t be good. I was put on progesterone and advised to stay in the city to be close to the hospital and come back in a week for another scan.
“I remember feeling very overwhelmed all of a sudden. We are self-employed dairy farmers with a 4 year old. The thought of just not going home that day to sort everything out, and being away from Beau indefinitely, was very confronting.”
The following week’s scan showed her cervix had shortened further to 0.5cm.
Despite doubling the progesterone dose and undergoing a course steroid injections, things began to unravel very quickly. An examination revealed Catherine was having regular contractions with her amniotic fluid leaking.
Born via an emergency C-section at 29 weeks and weighing 1440 grams, Leo was welcomed into the world by mum and a still out-of-breath dad who had arrived into theatre just minutes earlier.
“I can remember a deafening silence as I looked up wondering if he was OK, hoping he was OK, and then we heard him cry and there really is no better sound.”
After spending 6 weeks and 2 days in the NICU, Leo was welcomed home to Leneva Farm with minimal health complications.
Since their preterm birth experience, Catherine and Mathew have a new appreciation of the Australian Preterm Birth Prevention Alliance’s work to prevent preterm birth and it far reaching impacts.
“Since our journey with Leo, a friend in WA told me about Professor John Newnham and his pioneering research to prevent preterm birth, particularly around cervix length,” she said.
“Before my experience, I had absolutely no idea that cervix length was, or could be measured, or the significance it has in predicting preterm birth. Leo is here today, in the health that he is in, because of it and the team of incredible health professionals that looked after Leo and I.”
This program is supported by funding from the Australian Government under the Preventing Preterm Birth grant.
We recognise Aboriginal & Torres Strait Islander People as the traditional custodians of the lands on which we live and work and acknowledge that sovereignty of the land we call Australia has never been ceded. We commit to listening to and learning from Aboriginal and Torres Strait Islander people about how we can improve experiences & outcomes of healthcare for Aboriginal & Torres Strait Islander children and young people, their families & communities.
We acknowledge Māori as tangata whenua (original inhabitants) and Treaty of Waitangi partners in Aotearoa New Zealand. We recognise the tikanga (customary practices) of Maori and support their right to tino rangatiratanga (sovereignty). We commit to listening to and learning from Māori people about how we can improve experiences & outcomes of healthcare for Māori children and young people, their families & communities.