Every year around 300,000 babies are born in Australia, and while most arrive safely without complications, some have a more difficult journey into the world.
When Mikayla and Peter Eggins find out they are expecting a second child, the Brisbane couple are over the moon.
It had taken them several years to get pregnant with their first son, Ari, who's now five years old.
"We were seeing a fertility specialist and had a year or so on different medications, which is always tricky," Mikayla says.
Warning: This story contains images and descriptions of surgical procedures on newborn and unborn babies, which some people may find distressing.
Thirteen weeks into her second pregnancy, during a routine scan, Mikayla's doctors suspect something isn't quite right.
"They couldn't find something on the baby's brain that they were looking for," she says.
"They said not to worry too much, but to come back in three weeks. So we tried not to worry."
But a follow-up scan confirms the baby has a hole at the base of her spine.
Their unborn daughter is diagnosed with a condition known as spina bifida, which around 150 babies are born with every year in Australia.
"Realistically, not a lot of people will keep a baby who has spina bifida — it's just the reality of it," Peter says.
The condition occurs when a baby's spinal cord fails to develop properly, and in severe cases, can lead to permanent disability.
Mikayla's doctors lay out the couple's options.
"We had two pregnancies in 10 years, and were like … if there is something out there that we can do, we will do that," Peter says.
A challenging operation
Mikayla and Peter are sent to the Mater Mothers' Hospital in Brisbane, where around 300 high-risk pregnancies are referred every year.
The hospital's Centre for Maternal Fetal Medicine, led by obstetrician Glenn Gardener, carries out some of the most specialised and delicate surgeries in the country.
"Maternal foetal medicine is really the last stop on the journey to get help," Dr Gardener says.
"Most of these cases would be referred to us because they are extremely complicated and difficult to manage."
The majority of babies with spina bifida are operated on after birth.
But Dr Gardener's team is one of a small number globally — and the only one in Australia — trained to repair a spina bifida defect inside the womb.
The in-utero surgery, whilst not a cure, can significantly improve a child's quality of life.
"With spina bifida, the spine at one segment, unfortunately, is not enclosed with the normal bony protection and so it bulges out through a sac," Dr Gardener says.
"These nerves can become damaged by the effects of amniotic fluid and by rubbing against the wall of the uterus.
"The aim of surgery is to get in and protect those nerves so that you can preserve function."
Spina bifida also causes spinal fluid to accumulate, putting pressure on the brain, leading to impaired cognition and balance.
Many children born with the condition need a shunt implanted to drain this fluid, and experience difficulty walking due to nerve damage.
"The odds of walking unassisted are doubled if you have had this surgery, and the chance of needing a shunt is halved," Dr Gardener says.
But it is a challenging and delicate operation, carried out between 22 and 26 weeks of pregnancy, on a foetus just one third of the size of a newborn.
If there are complications during the surgery, the unborn baby may need to be delivered then and there — months before its due date.
"Operating on the unborn baby doesn't come easy to an obstetrician like myself because there is always this concept of risk that has to be carefully balanced," Dr Gardener says.
"We are going into an area that I really feel we're not meant to be.
"It's a sanctuary for the foetus to grow and develop, and we invade that sanctuary — but only in the circumstances to help it."
Inside the womb
At 25 weeks' pregnant, after undergoing a series of health checks, Mikayla and her baby are scheduled for open maternal foetal surgery at the Mater Mothers' Hospital.
On hand to manage the delicate procedure is a specially trained team of 15 staff, which includes a neurosurgeon, plastic surgeon, anaesthetist, sonographer, midwife, theatre nurses, and two maternal foetal medicine surgeons.
Because the spinal repair is performed on the baby while it's still in the womb, the first part of the operation involves opening Mikayla's abdomen to access her uterus.
"You are operating on two people virtually at the same time … through the mother, through the uterus and through the membranes," Dr Gardener says.
The surgeons take a slow and methodical approach. They must avoid the placenta at all costs — or risk the pregnancy.
Once inside the womb, neurosurgeon Martin Wood repairs the hole in the baby's spine.
He separates the spina bifida lesion from where it's attached to the skin, and then guides the spinal cord back into the correct place.
"Then the goal really is going to be to get good skin coverage over the lesion — we want it covered by healthy skin," he says.
With no need for a skin graft, Dr Wood completes the repair in just under 15 minutes.
Dr Gardener begins the painstaking task of closing up the uterus and placing it back inside Mikayla's abdomen.
"That's probably one of the most important parts of the operation, because we have opened not only the uterus, but the bag that the baby is in, and so we want a watertight closure to make sure the amniotic fluid doesn't leak out," he says.
After three hours in surgery, Mikalya is taken to recovery, and it's hoped that her baby won't be seen again until her scheduled delivery date in 12 weeks' time.
"Meeting parents taking on this intervention with all of the risks to the mother and the foetus … I don't know as a parent what I would have done in this situation," Dr Woods says.
"Every single one of the mothers- and fathers-to-be that we have met and dealt with as part of this team — the decisions they've made on behalf of their children are just so brave."
'We didn't know whether we'd lose our girl'
Surgery inside the womb is only possible for a handful of complex foetal conditions.
Other babies must wait until they're born for life-saving treatment.
A month away from giving birth, Melanie and Nathan Baird uproot their lives on the Sunshine Coast to be near the Mater Hospital in Brisbane.
At Melanie's 20-week scan, the couple found out their unborn daughter has hypoplastic left heart syndrome, a life-threatening defect that requires treatment soon after birth.
"They were taking a while [to do the scan] … but at no stage did we think anything was wrong, because I don't think anyone ever thinks that they're going to hear that news," Melanie says.
"It wasn't until I walked away trying to hold it together and got into the car that it hit me.
Their daughter's care is passed into the hands of a specialist team spanning the Mater Hospital and Queensland Children's Hospital.
Over the first six months of her life and into early childhood, their daughter will require three major operations to rebuild her heart.
The first will be done within the very first few days of her life.
"Hypoplastic left heart syndrome is one of the most complex congenital heart conditions," says foetal cardiac nurse Karen Eagleson from Queensland Children's Hospital.
"Children and young people and adults who live with this are essentially functioning on half a heart."
Keeping Tilly alive
In December, following a closely monitored pregnancy, Melanie gives birth to a baby girl named Tilly, who is quickly whisked away by the Mater Hospital's neonatal team.
"On the outside, she looks perfectly healthy. But on the inside, there's quite a bit abnormal about what's going on with her heart," neonatologist Pita Birch says.
Normally once a baby starts to breathe for itself, its heart pumps blood past the lungs, allowing oxygen to be circulated throughout the body.
But Tilly's heart is unable to do that. While the right side of her heart is well developed, the left side is almost non-existent.
To keep Tilly's foetal circulatory system functioning, Dr Birch gives her medication through a drip to help stabilise her heart.
"It's really important to treat Tilly quickly, to keep that duct open, because that's the connection that keeps the right side of the heart able to pump blood around the body, and really importantly, to her brain."
Rewiring the heart
Six days later, Tilly is strong enough to have the first of three surgeries to remodel her incomplete heart.
A small piece of donated heart tissue has been flown in from Sydney overnight and, all going well, will function as part of Tilly's new heart.
Using the donated tissue and a specially designed tube, cardiac surgeon Prem Venugopal will completely rewire the layout of Tilly's heart.
But in order to make the repair, he has to completely stop her heart.
Tilly is placed onto a bypass machine, which takes over the work of her heart and lungs.
As the supply of blood returning to her body and heart goes still, Dr Venugopal has a clear and bloodless field to work on.
Tilly's aorta is just a fifth of the size it should be, so precision is vital as Dr Venugopal patches in the donor artery.
"The clock is ticking, every minute counts. The longer the heart's stopped, the more tricky it gets for the heart to restart again — we can't keep the heart stopped forever," he says.
After more than five hours of painstaking surgery, her heart slowly wakes up, as blood pumps through the new pathways.
"Once Tilly's heart starts beating, then everyone else's heart starts beating too," Dr Venugopal says.
While their daughter is not out of the woods yet, it's the best outcome Melanie and Nathan could have hoped for.
"The day before, she was given a one in four chance of not surviving the surgery at all," Melanie says.
Violet 'a beautiful, content little girl'
Twelve weeks after having open maternal foetal surgery, Mikayla gave birth to a healthy baby girl named Violet, via caesarean section.
"They could tell everything was fine and she came straight to me for a breastfeed and didn't leave me the whole time," Mikayla says.
Now seven months old, Violet doesn't need a shunt, and there are promising signs she will walk.
"She is doing so well … keeping up with her milestones," Mikayla says.
"She is just a beautiful, content, happy little girl."
Reflecting on her daughter's journey into the world, Mikayla says the decision to undertake in-utero surgery was "never about avoiding disability".
"Our daughter will always have spina bifida," she says.
"But we were able to preserve what function she still had and minimise early complex medical issues, and for that, we are so grateful."
The long road ahead
Tilly recovered well from her first operation and after two-and-a-half months in hospital, is finally able to leave.
For now, the Baird family are staying in an apartment in Brisbane, to be close to Tilly's care team.
But a long and challenging road lies ahead.
Tilly needs another two surgeries to reconstruct her heart, the first in just a few months' time.
"While we wait for the next surgery, she seems to be doing really well, otherwise she wouldn't have been able to come home with us," says Melanie.
"We're so grateful for that."
Watch Catalyst's Miracle Babies: Operation Hope on iview.
Credits
- Words: Johanna Gibson, Poppy Taylor and Olivia Willis
- Digital editing and production: Emma Morris and Joel Zander
- Video editing: Hannah Draper
- Catalyst director of photography: Brigham Edgar
