Carla Sikes and her partner Mick McElhenny held each other and wept in the hospital carpark.
They’d just been told their baby boy had spina bifida, which can result in severe disabilities.
“The obstetrician explained my baby’s spinal cord and nerves were exposed in an open, clear sack on his back,” recalls Carla, 33. “There was no skin covering it.”
The mum from Yeppoon, Queensland, who was 20 weeks pregnant at the time, felt her whole world implode. “I was in shock. I wasn’t expecting that or any diagnosis. Once it sunk in, I was an emotional wreck.”
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But there was a glimmer of light in the darkness. Carla’s obstetrician at Rockhampton’s Mater Private Hospital explained that surgery to repair the spine could be performed once bub was born – or possibly even in utero. It wasn’t a cure, but it could improve the baby’s mobility and chances of walking independently.
It was a lot to take in, but Carla and Mick, 37, who run a construction company together, knew they had to be strong for the journey ahead.
“We made the decision there and then that we would do anything for our baby – no matter what,” she tells Woman’s Day.
Four days later, Carla travelled to Brisbane’s Mater Mothers’ Hospital and spoke to foetal medicine expert Dr Glenn Gardener about surgical options.
In a bid to preserve whatever function their baby boy already had, Carla and Mick decided to go ahead with the operation while he was still in the womb.
“Bub was getting bigger, so space was getting less and less,” explains Carla. “Having an open spinal cord there, it was just constantly being kicked against the uterus wall and damage was being done.”
The surgery was incredibly complex, but after a raft of tests, the doctors decided Carla and the baby were suitable candidates, and were booked in for the surgery.
“I was 24 weeks and three days gestation,” she recalls. “Mick stayed with me until I was wheeled down to theatre. I was very scared. The only thing I can remember from that point is coming to and grabbing my anaesthetist’s hand, saying, ‘Is my baby OK?’ I found out the following day that I’d already asked that question 150 times!”
The operation had been a success and the relief was overwhelming, but the drama wasn’t over just yet. One of the side effects of the surgery was a heightened risk of premature birth. Baby Ethan managed to hang on for another three weeks before he was born via emergency Caesarean on 22 June. He was 13 weeks premature and weighed a tiny 1.29kg.
Carla ached to hold her newborn baby, but he was struggling to breathe.
“A doctor grabbed my hand and put it on Ethan’s cheek,” she recalls. “All I could really see was the machine to help with his breathing – there were cords and lines everywhere.”
Ethan, who was in a plastic bag to keep him warm, was whisked to the neonatal intensive care unit. After five major operations and 11 weeks of around-the-clock care, he was finally well enough to go home.
Proud Carla tells us Ethan has gone from strength to strength and is reaching all his milestones.
“Ethan has full leg movement, right down to his toes. He has amazing reflexes and his skin sensation is really good.”
Carla says she will always be thankful to the doctors and nurses who helped Ethan. “They were all so supportive about giving our baby the best outcome possible for his life.”
Carla and Mick’s five older children, Blake, 14, Mason, eight, Flynn, seven, Pelia, four, and Jorja, two, are clearly as besotted with nine-month-old Ethan as their parents.
“To see him so tiny and know what he’s been through, it just amazes me,” smiles Carla.
