Although Queensland mum, Carla Sikes, had heard of the term Spina Bifida before, she admits she didn’t know much about it. That is until her son was diagnosed with it.
Carla received the news that her baby had Spina Bifida at her 20-week ultrasound. This birth defect involves the way the spinal cord develops. There are three types of Spina Bifida. Carla and her partner, Mick, were heartbroken to discover their son had the most severe type – myelomeningocele.
Carla and Mick met when Dr. Glenn Gardner and his team at the Mater Mother’s Hospital in Brisbane. Dr. Gardener is currently the only specialist in Australia and New Zealand who performs this in-utero surgery.
Surgery while in the womb
Treatment for myelomeningocele typically involves surgery to repair the opening in your baby’s spine. In Ethan’s case, it was recommended that he have surgery while in the womb. This is known as foetal surgery, and, although scary to think about, Carla knew this was the best choice for her son.
“When I heard about Dr Gardener and the foetal surgery I knew that’s what I wanted to do. We just wanted to give our little boy the best possible chance, despite the risks,” Carla explains.
Carla needed to meet with the specialists for weeks leading up to the surgery and also undergo an MRI, genetic testing, and blood tests to confirm it was the right choice for her and her son.
Carla and Mick, along with their five other children who live in Yeppoon, QLD, travelled back and forth from their home in Yeppoon to Brisbane several times in the lead-up.
“There were a lot of really horrible conversations we had to have in the lead-up, about what we wanted to do if Ethan was born during the operation… and the risks to both of us, which included death.”
Brutal but worth it
At 24 weeks pregnant, Carla became the 12th mother in Australia and New Zealand to undergo the groundbreaking surgery.
Ethan’s four-hour surgery while in the womb involved incisions into Carla’s abdomen and uterus to reach Ethan’s lower back and repair the spine abnormality. While the surgery is not a cure, it does aim to improve the child’s quality of life and chances the child will be able to walk independently among other benefits.
“It was just such a relief the surgery was happening and I actually felt pretty good, because we knew more damage was happening to the spinal cord every day.
There was so much support from everyone at the hospital. It was incredible.”
Carla remained in Brisbane as she recovered from the very complex surgery and admits the pain was pretty brutal but completely worth it.
Just three weeks later, Carla gave birth to her son, on June 22 2022, via an emergency c-section. He weighed a tiny 1.29kg and was born 13 weeks prematurely.
“He was in a little plastic bag, and was so tiny.. but he was absolutely perfect.”
Ethan, which means “strong” has proven to the world that he’s a fighter from the moment he arrived.
At just two days old, he suffered a spontaneous bowel perforation, with doctors having to remove five centimetres of his bowel, and he also developed a UTI which had a very serious impact on his health.
Ethan was also born with hydrocephalus, a build-up of fluid in and around his brain often associated with spina bifida. He’s already undergone two brain surgeries to drain the fluid around his brain.
“The swelling can be quite confronting to look at and it feels like jelly to touch,” Carla says. “It’s like a soft stress ball. The way he looks doesn’t bother me, it’s about how the world will view him.
“I remember the first time I ever took him outside you could actually see through part of his head.”
Ethan journeys home
Ethan is now four months old, and, although it’s still too early to give him the medical all-clear, he’s doing absolutely amazing. He is home with his siblings and parents in Yeppoon now and has shown he has full movement in his body “right down to his toes”.
“Ethan is my miracle baby. And the scar that runs from my belly button down to my pubic bone will always be a constant reminder of my courageous son. He’s absolutely amazing.”
Carla also credits the team at the Mater for their incredible support.
“No one at Mater told me to terminate. Dr Gardener was always so calm and spent hours answering my questions.
He said ‘It’s OK Carla, I’m going to look after you and your baby’, and I held onto those words the whole time. His words have given us all such strength.”
Ethan is surrounded by love and support and five older siblings to watch over him and his parents are forever grateful for their strong little warrior.
“There is so much support’ – Spina Bifida Awareness
They share Ethan’s amazing story during Spina Bifida Awareness Month to give hope to other parents whose babies have been diagnosed with this condition. It can be a very scary diagnosis, impacting one in 2000 pregnancies in Australia and Carla wants others to know that families don’t have to go through this alone.
“I never thought this would happen to me. You never think there will be medical issue like this you have to deal with. But there is so much support out there for families going on a similar journey.”
To learn more, visit, CPL.org.au.