When Carla Sikes found out at her 20-week ultrasound that her sixth child – a baby boy – had spina bifida, a condition affecting around one in 2000 Australian babies, everything seemed to freeze.
“I think I just went completely numb,” recalled the Queensland mum.
The baby’s spinal cord had failed to close, meaning part of it was protruding from the bottom of his back in a fluid-filled sac.
“All I remember asking is ‘will my baby live?’ and my obstetrician looked at me and said ‘everything is going to be OK.’ That calmed me down enough to hear the next steps.”
Those next steps would be more remarkable than any TV medical drama.
Because the baby met certain criteria, doctors decided the best course of action would be to operate on him to close the spinal cord opening. The twist being they’d perform the operation while he was still inside his mum.
“When they told me the operation would happen during the pregnancy, I was amazed,” said Carla. “I had no idea they could do that.”
The procedure was performed by Dr Martin Wood at Mater Hospital in Brisbane, the 12th of its kind at what is currently the only hospital to facilitate the procedure in Australia and New Zealand. Despite this, Carla says the compassion and expertise of staff made the process so much easier to deal with.
“They took every chance to reassure me at every step,” she said, “and all of the organising was taken care of for me, so in many ways, all I had to focus on was preparing myself and coming to grips with the diagnosis.”
“You get a read on people,” she continued, “you can tell if they’re feeling nervous, or worried about something – and no one ever gave that vibe. It was so comforting.”
Carla and her baby – who she’d named Ethan, because it means ‘strong’ – went in for surgery at 24 weeks gestation. When she woke up from the procedure, only one thing was on her mind.
“I just remember the anaesthetist still sitting next to me when I woke up, and the first thing I asked was ‘is my baby OK?’ I was trying to feel my belly to make sure he was still there.”
The anaesthetist reassured her that everything had gone well.
The high-risk operation, despite being described by Dr Wood as being like a game of “surgical Twister”,was a success.
“When I spoke to him the following day, he laughed – he told me I asked that same question about 150 times,” she said.
“All I felt was relief,” said Carla, although just 20 days later, the family was thrown yet another curveball.
The plan had been to deliver Ethan via caesarean section at Mater Mothers at 36 weeks, but at just 27 weeks, Carla’s water broke.
For the next three days, doctors tried to stop labour, but on June 22, Ethan was born via emergency C-section.
Carla and her partner Mike got to briefly meet baby Ethan – weighing just 1.29kg – before he was taken to a special care unit, where he would spend the next four months growing stronger.
His journey wasn’t without hurdles. On Ethan’s second day of life he needed emergency surgery after a hole was discovered in his bowel, a common complication of prematurity. He also developed hydrocephalus (fluid on the brain) and required a number of brain surgeries, resulting in a shunt being implanted in his head.
“His head was very misshapen from all the fluid at first,” explained Carla, who remained in Brisbane in a rental unit with her mum and younger daughters to be by her son’s side, while her partner looked after the couple’s older sons and ran their construction business back in Yeppoon.
“The world doesn’t stop just because you have a baby in Neonatal Critical Care Unit,” she laughed. “At the time, I was just so hyper focused on being there for my baby that we made it all happen, but just the other day I broke down in tears talking to my mum about it. If you had told me that I would have to spend four months apart from the older boys, it would have broken my heart. I just don’t think I could have done it, but of course you do what needs to be done when your baby needs you.”
These days Ethan,who recently turned one, is home with his five older siblings and doing well.
“He is just the easiest baby,” gushed Carla, “he is always smiling, always happy.”
While Ethan is working with a physio to overcome some physical hurdles created by his surgeries, the future looks incredibly bright for the boy Carla and Mike call their “miracle”.
“I just couldn’t have asked for a better outcome,” said the proud mum.
“Knowing Ethan now, the little boy that he is, I would never change him. I wouldn’t change a single thing about him.”
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