When Queensland parents Nathan and Annika Farrant look at their five-year-old son Johnny, their hearts burst with pride.
Johnny Farrant was born with spina bifida and pulmonary hypoplasia at Mater Mothers' Hospital in South Brisbane, and from the moment the couple's little 'superhero' took his first breath, they have been in awe of his determination to keep fighting.
"We were told it was likely Johnny would not walk if he did survive birth," Mrs Farrant said.
"Now he independently walks but mostly uses a trike to move bigger distances."
Spina bifida occurs when a developing baby's spinal cord fails to develop or close properly while in the womb.
The Farrants are sharing their story during World Spina Bifida Awareness Month in October to help create awareness about the disability that affects about 150 babies born in Australia each year.
In 2018 doctors told Mrs Farrant at her 20-week pregnancy scan there was a "clear abnormality" with her unborn son.
"On the scans it looked like his backbone was curved and a mass the size of his head was off to his side," Mrs Farrant said.
"No one in our family had spina bifida and the news came as such a shock.
"It was a pretty grim diagnosis."
The couple had tried for a baby for 10 years before their "little miracle" Johnny arrived. Their second child, Eloise, is now two.
Due to the severity of Johnny's condition, surgery in utero was not an option for Mrs Farrant and her unborn baby.
Within days, Mr and Mrs Farrant, from the Redland City region, attended the Mater Centre for Maternal Fetal Medicine at South Brisbane's Mater Mothers' Hospital for more scans and expert care.
"Doctors mentioned the words including one kidney, chest wall deformity, spina bifida, hydrocephalus, scoliosis and kyphosis (excessive forward rounding of the upper back)," Mrs Farrant said."
After a great deal of "doom and gloom", Mrs Farrant said she will never forget meeting Mater Director of Neonatology Dr Pita Birch and Director of Maternal Fetal Medicine Dr Glenn Gardener, who guided her and her husband through the "nerve-wrecking pregnancy".
"Dr Gardener is an amazing man who offered us hope. He detailed that he thought this little guy had a fighting chance," she said.
"He was kind, gracious and regularly took us through what was a possibility every step of the way."
Johnny was born at 39 weeks gestation and Mrs Farrant said she remembers hearing her son cry for the first time.
"It was such a special moment – for all of us," she said.
Dr Birch said during the last four years, 26 babies were born at Mater Mothers' Hospital with spina bifida.
He said the care of babies with spina bifida was a multidisciplinary and interdisciplinary task.
"Care involves neurosurgical, neurology, rehabilitation (QCH has a team that provides rehabilitation care for babies with spina bifida), neonatology and general paediatrics," Dr Birch said.
"It also involves doctors, nurses, physiotherapists, speech pathologists and occupational therapists."
For two weeks in the Neonatal Critical Care Unit at Mater Mothers' Hospital, Johnny received around-the-clock care by a multidisciplinary team before having corrective spinal surgery at the Queensland Children's Hospital.
"We had to navigate Johnny's breathing needs, feeding and handling him. Most of the time it took two nurses to pick up our tiny baby due to the instability of his defect," Mrs Farrant said.
"It wasn't clear that after surgery Johnny would have any ability to move his lower limbs nor what impact it may have on his arms, but this guy wriggled and giggled!
Mr Farrant said that while being a medically complex case, Johnny was a delightful and easy baby to care for.
"He had a very obvious spinal curve and has always had a weaker left leg," Mr Farrant said.
"Through NDIS we have physiotherapy support to develop this wonderful boy's abilities."
Mr Farrant said he is in awe of his son's determination and said he enjoys Kindy and learning with his friends.
"School will be challenging for Johnny, to navigate how he can achieve and attempt things," he said.
"For him it often comes, just at a slower pace. He is cheerful, cheeky and wonderful.
"For us as parents, it's one day at a time navigating our journey with a child who has spina bifida."
