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Watching a child’s first steps is always a magical moment, but when Lucinda Ward began to walk it seemed like a miracle to her mum Jenaya.
The 22-month-old has spina bifida, a condition in which the lower part of a baby’s spinal cord is exposed, and which can cause physical and developmental challenges.
When Lucinda’s condition was diagnosed in the womb, Ms Ward feared her daughter would be confined to a wheelchair – but thanks to the nation-leading Maternal Fetal Medicine (MFM) team at Brisbane’s Mater Mothers’ Hospital the fearless toddler is now walking tall.
The hospital is the only centre in Australia and New Zealand which performs surgery to repair spina bifida in babies in utero and has now operated on 33 babies since first performing the ground-breaking procedure 10 years ago.
“It’s been a dream come true watching Lucinda take her first steps, she’s worked really, really hard to get there, and she is such a happy and curious little girl,” Ms Ward said.
“She has a leg brace and a walker to help stabilise her at the moment, but she’s doing amazingly well.”
Gold Coast mum Ms Ward was four months pregnant when she was given the unexpected and life changing diagnosis that her daughter had spina bifida, a condition affecting up to one in 2000 pregnancies.
As well as being told her daughter may never walk, she was also told that she might need a shunt in her brain and could have serious bladder and bowel problems.
“Disability doesn’t scare us and it doesn’t define her,” Ms Ward said.
“My four-year-old son was born with a rare cancer and needed chemotherapy for a year, and he is a healthy and happy boy now.
“So, when we got this diagnosis, my husband and I researched our options because we wanted to give our daughter every opportunity, and I decided to have in-utero surgery at 25 weeks to try to repair her damaged spine,” Ms Ward said.
The highly complex surgery to close the opening of Lucinda’s spinal cord was performed by a specialist team at the Mater Mothers’ Hospital led by Maternal Fetal Medicine director Dr Glenn Gardener and Mater Neurosurgeon Dr Amelia Jardim in May 2024.
“With open spina bifida, the spinal nerves at the lower back are not covered by skin and bulge out into a sac of cerebral spinal fluid,” Dr Gardener said.
“The exposed nerves can become progressively damaged, and the cerebral spinal fluid can leak out.
“The aim of the surgery is to cover the open spinal defect to protect those nerves as the fetus continues to grow and develop in-utero.”
Dr Gardener and his team have been performing the groundbreaking surgery for the past decade at Mater Mothers’, which is the only hospital in Australia and New Zealand able to perform the in-utero operation.
The first in-utero surgery was conducted in July 2016 with a team of doctors from Vanderbilt University Hospital.
“The surgery is not a cure, and it does carry risks for the mother and baby, but it offers the chance to improve a child’s quality of life,” Dr Gardener said.
“The odds of walking unassisted are increased if you have had this surgery, and the chance of needing a shunt is reduced.”
For Lucinda and the many other children Dr Gardener has operated on, as well as their families, the surgery can be life changing.
“This surgery has changed the course of Lucinda’s life,” Ms Ward said.
“It has given Lucinda so much opportunity and it has significantly improved how she’s able to mobilise and interact with the world.
“She currently has no bladder or bowel problems and doesn’t need a shunt in her brain.
“It’s everything we could have hoped for as an outcome of the surgery, and we are so incredibly grateful to Dr Glenn Gardener and the surgical team at Mater Mothers’.
