The dedicated team battling to save our tiniest warriors
Just a decade ago, the chances of a baby being born at 24 weeks and surviving was considered a “miracle”. But today, thanks to medical advancements and a dedicated team of professionals, miracles are happening every day. WATCH THE VIDEO
The Royal Hospital for Women intensive care unit is bursting at the seams — a victim of its own success.
The NICU cares for more than 1600 babies each year and is designed to house 16 ventilator beds for the sickest children in the state. But the unit has had to cram in three more and they are always full.
Neonatologist Professor Kei Lui, who has cared for the babies in the NICU for more than 22 years, said he had asked the Health Department for more beds and more room.
“We are a victim of our own success, our wards are always full,” Dr Lui told The Sunday Telegraph.
“I told the department we need a plan for more NICU beds. It’s not population growth, but because of our own success, a baby who would have died in the first couple of days is now staying in intensive care for 12 weeks.”
“MIRACLE BABY”
It’s a cliche but Hollee Austin’s daughter Skylah is, from everyone’s memory, a “miracle bable” — the smallest ever to survive extreme prematurity.
And her mother also came very close to death.
Ms Austin, 34, put her own life on the line to get Skylah into the “viable” zone of 24 weeks. Babies born at this time now have a survival rate of 70 per cent, up from 50 per cent a decade ago.
She had already lost a son last year when, at just 18 weeks into her pregnancy, she developed severe pre-eclampsia. The only treatment is to deliver the baby or both will die. Noah was delivered but did not have a chance at 18 weeks.
Ms Austin, from Mudgee, was at risk of pre-eclampsia again with her second pregnancy and was admitted to St George Hospital at 20 weeks and then moved to Royal Women’s.
Severe pre-eclampsia struck again at 23 weeks.
The doctors said it was her life on the line and she was wheeled down to surgery.
“My blood pressure was extremely high and I was going to have a stroke if I did not deliver her,” she told The Sunday Telegraph.
“I was prepped for surgery and I said: ‘She won’t make it at 23 weeks, I can’t lose another baby’.”
Doctors made one last call to het specialist. A raft of tests were analysed while Ms Austin held her breath, knowing every extra day added to her baby’s survival chances outside the womb.
“My specialist told them: ‘She can hold off a little bit’,” she said.
So for a few more days she battled the headaches, as she inched closer to the 24 week finish line.
“At exactly 24 weeks they said we can’t wait any more, it was my life otherwise, but I held on for and wasn’t going to give up.”
Skylah was delivered via Caesarian weighing a tiny 475 grams — less than a tub of butter.
“I was so proud, but she looked like a gecko, her skin was sticky and you could see through her,” she said.
MINEFIELD
Babies this small are placed in a plastic bag to protect the undeveloped skin for the journey to the intensive care unit.
“Their skin is so fragile, they can lose fluid across the skin,” Prof Lui said.
Before 24 weeks or under 500 grams are the two benchmark measures that mean survival will be an enormous challenge.
Skylah needed to be ventilated because her lungs were undeveloped.
“A lot of skill is required. The breathing tube has to go into a very tiny windpipe, it’s a 2.5mm tube,” Prof Lui said.
One of the biggest advancements that has impacted survival rates is the NAVA ventilator, which can read the electrical signal between the brain and the baby’s diaphragm so it knows when the baby thinks about taking a breath.
“It allows us to time our breathing support with the baby’s intention to breathe and how much support the baby wants,” Prof Lui said.
Previously, mechanical ventilators pushing air in damaged the baby’s lungs. The NAVA minimises time spent on the ventilator and has saved countless lives since its introduction.
The second improvement is nutrition. The babies are fed Total Parental Nutrition as well as pasteurised human breast milk donated by other mothers from day one.
Getting the babies to grow is imperative but, as Prof Liu puts it, the journey from here is “up, down, up, down — it’s a minefield”.
Common “mines’ include if the ductus arteriosus, a foetal blood vessel in the heart, closes on its own. If not, surgery is required. The gut may not tolerate breast milk and part of the bowel can die. The lungs can be damaged by ventilation and brain vessels in the brain can bleed. Eyesight can be damaged by the extra oxygen required and the microscopic threat of bacterial infection is a constant.
FIRST PRECIOUS CUDDLE
One week into her precarious life, part of Skylah’s bowel started to die. She needed surgery but the tiny baby was too sick to be moved, so the theatre came to her.
“That was the most traumatic experience of my life,” Ms Austin said.
“I thought how on earth are they going to do surgery on something so small? The doctor said if they can fix it she will survive — if not, she won’t. I just wanted to run out and break down.”
Skylah pulled through and, after four weeks of life, Ms Austin got her first cuddle. It’s known as kangaroo care, a skin to skin cuddle for baby and parent. By this time, she and husband Peter moved to Camden, south of Sydney, to be closer.
“I was too scared to move, she was so small but as soon as we started to do the cuddles she started to thrive,” Ms Austin said.
Because parents are usually bedside with their babies, they have been co-opted into the care. They are part of a model called family integrated care where some of the duties such as cleaning eyes and changing nappies are performed by the parents.
“In a recent trial published we showed that babies that come through this model of care grow better and parents have less stress and anxiety,” Prof Lui said.
Skylah also needed laser surgery on her eyes to counter the effects of too much oxygen.
Nurse Kobe Van Wessem, who looked after Skylah from day one, is thrilled to have watched the tiny baby grow and begin to thrive.
“She’s amazing, she was so unwell and now she is on the homeward run,” Ms Van Wessem said.
After five months, Ms Austin took her baby girl home to Camden this week weighing 2.8kg, six times her original birth weight.
“The day has finally come, now I’ve got to keep this little human alive all on my own without all the doctors and nurses. I’m so thrilled, but also so scared.”
NURSE KOBI VAN WESSEM
Neonatal nurse Kobi Van Wessem always wanted to work in the NICU.
“I used to work in palliative care, and this is the opposite end. It’s pretty exciting, it’s the beginning of life, it’s special, but also scary,” the 33-year-old said,
Working on such tiny babies, checking their vitals, their blood gases and handling them was, at first, quite daunting.
“The first time was pretty scary, I do have small hands but these babies are so very small, under a kilo. Skylah was definitely one of the smallest. She is amazing, she was so unwell in the beginning, now she is doing really well.”
BABY MADDISON O’CONNOR
Midwife Kelly Hollingmode was happily assisting birthing women at the Royal Hospital for Women right next door when her waters broke, 14 weeks before her due date.
The second time mum gave birth to Maddison O’Connor on Sunday June 9 weighing just 1045g.
“Last week I was working, this week I have a baby,” the Kirrawee mum said.
Maddison, just a few days old, required the humidity in the humidicrib to be 85 per cent to keep her skin moist while it matured enough to cope being outside the womb.
BABY KAYCEN EVERTON
Carlene Abe suffered a severe form of pre-eclampsia 25 weeks into her first pregnancy.
“The only way to fix pre-eclampsia is to take the baby out otherwise we would both die,” Ms Abe, 27, said.
So Kaycen Everton was born on April 5 at 25 weeks and weighing 600 grams.
‘It was terrifying, I didn’t know if he was going to die or what the outcome was going to be, but the team is amazing. He has had a couple of infections, but other than that he is OK,” Ms Abe said.
At 10 weeks of age Kaycen had doubled his weight and still needs the help of a breathing apparatus that helps keep his airways open.
Carlene attends for three hours a day to help care for Kaycen and give him his kangaroo care cuddles.
CUPCAKES
Once a year, Grace Findlay walks into the neonatal intensive care unit at the Royal Hospital for Women laden with cupcakes for the staff.
After all, they saved her life.
Mum Belinda remembers back in 2001, it was left up to Grace, just 650 grams of her, to show fight before they would offer a lifeline.
“I was 24 weeks and one day and they said to me if the baby takes a breath, they would resuscitate but if she didn’t, they wouldn’t. Thankfully she did take a breath,” Mrs Findlay said.
Dr Meredith Ward was then a neonatologist in training under Professor Kei Lui and she remembers Grace as her first 24 weeker to survive. Few even made it back to the unit.
“Grace is one of our miraculous survivors from that time. Back then the survival rate was 50 per cent and the chance of a developmental problem was 30-40 per cent, so we had a high percentage with developmental problems. In the past, a baby’s chance of going home alive and well (if born at 24 weeks) was very low,” she said.
“It’s beautiful to see her now, it’s amazing and she is my whole story here and to see my first 24-weeker do her HSC is amazing.”
“Back then, a third would have some functional disability,” Prof Lui said. “But now it’s only about 12 per cent and the most common is needing some help in learning, and less than eight per cent will have cerebral palsy.
“Grace was a tough one,” Prof Lui said. “Parents think we should take a lot of the credit but some babies, like Grace, are just more resilient.”
Grace survived three major infections and she had a small bleed in her brain. After three and a half months, Grace graduated and went home.
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