Ethan McElhenny and his mother, Carla Sykes, are both “battle-scarred” from surgery when he was still in the womb to give him a chance at a better life.
Neurosurgeon Martin Wood operated on Ethan at 24 weeks’ gestation at the Mater Hospital in Brisbane after an ultrasound revealed he had spina bifida, a serious, disabling condition that occurs in about one in 2,000 pregnancies in Australia .
It’s a delicate operation, and Ethan at the time measured about the length of an ear of corn and weighed less than 1 kilogram.
“A baby … has less blood volume than when it’s bigger, stronger and heavier,” Dr. Wood said.
“The fabrics are more delicate. The margin of error is much smaller. It’s certainly more difficult in many ways.”
And there are more people in the operating room, with separate groups that focus on mother and baby.
So much so that Dr. Wood compared intrauterine surgery to something akin to a game of “surgical twister.”
“Guns are everywhere, people are on the way. It’s a little exhausting,” he said.
Ethan’s spinal cord failed to close properly, leaving part of it exposed in a fluid-filled sac protruding from his lower back.
Ms Sykes and her partner Mick McElhenny, who have five other children – Blake, 14, Mason, 8, Flynn, 6, Pelia, 4, and Jorja, 2 – found out about Ethan’s spinobifida about midway through her pregnancy.
The couple, who live in Yeppoon, central Queensland, found out he was a boy at the same meeting.
“It was nice to know who was fighting for their life in my belly,” Ms Sykes said.
“After I understood the nature of the surgery and the possible outcomes and the journey that Ethan and I have been on, I thought I would like to name him something that means ‘strong’.
“I left the meeting and just Googled boy names on my phone that mean ‘strong’ and Ethan was number one on the list. I’ve always liked the name Ethan.’
At that stage, she had no idea how strong her youngest son must be.
Doctors had hoped to deliver Ethan via a planned caesarean section at the Mater Hospital at 36 weeks pregnant.
But on June 22, just 20 days after the intrauterine operation, he was born three months premature by emergency C-section after his mother’s water broke.
It weighed only 1.29 kg.
He required further surgery two days later after developing a hole in his bowel, a complication of his prematurity.
He’s not even four months old, but he’s also had two operations to prevent too much fluid from building up in his brain after developing hydrocephalus, a condition linked to spina bifida.
Ethan has a tube running internally from his brain to his abdomen to drain excess fluid.
“He’s got a lot of battle scars on his tiny body,” Ms Sykes said. “I guess it just tells his story, his amazing story.
“He’s a real little miracle, we all feel.”
Doctors will have to wait until he is older to determine how successful Ethan’s spina bifida surgery was in the womb.
At this stage, the signs are positive.
He has full leg movement down to his toes.
The Mater Hospital’s director of neonatology, Peeta Birch, said Ethan’s bladder control also looked “pretty normal”.
“The rehab team will visit him periodically, but he doesn’t really need a lot of rehab,” Dr. Birch said.
“He’s doing very well.”
Ms Sykes has a heart tattoo that reads: ‘Laugh without fearing the future.’
The 33-year-old said she got the tattoo after suffering a miscarriage in 2017, but continued to draw strength from the words during Ethan’s journey.
“Obviously, we don’t know exactly what Ethan’s future looks like or what he might do,” she said.
“But at the end of the day, he’s still our son. We will love him no matter what. I wouldn’t change it.”
Five willing assistants
The mother-of-six said she had five willing helpers whenever she needed help with Ethan after bringing him home to Yeppoon from hospital late last month.
“Everybody fights over who gets to hold him and who gets to bathe him,” Ms. Sykes said of Ethan’s brothers.
“He’s just perfect for them.”
Ms Sykes said her faith in God helped her get through the months Ethan was in hospital and before he was born.
“It was hard,” she said.
“I just trusted God and what God was going to do for Ethan,” she said.
“I don’t know how else I would have done it. Obviously, I also have the support of my family.”
Ethan was the 12th child to undergo spina bifida surgery in utero at The Mater Hospital, the only facility in Australia and New Zealand to perform the surgery.
The first such procedure at Mater was in 2016.
Before that, the surgery was done after he was born, and the chances were that he had a much greater disability.
Prerequisites for rare intrauterine operations
Dr. Wood said the intrauterine operation was not without its risks.
Babies are much more likely to be born prematurely, and there is a chance that they will be born during surgery.
Their mothers are at greater risk of blood transfusions after childbirth and other complications.
Dr Birch also cautioned that not every baby with spina bifida qualifies for surgery in utero, and both mother and baby must meet certain criteria.
Mothers who have previously given birth prematurely are not eligible for surgery.
Other contraindications include women with a shorter than normal cervix and those who have had placental abruption – when the placenta has detached from the inner wall of the uterus before delivery.
In eligible children, the benefit can be significant.
Maternal-Fetal Medicine Director Glenn Gardener said the in-utero surgery is aimed at making it more likely that the baby will walk unaided.
Ethan now weighs 3,760g and his mum describes him as a contented child despite the difficulties in his life.
“I know I would complain if I had to go through what he went through,” Ms Sykes said.
“He’s just overcome everything that life has thrown at him. He’s not getting in the way at all. He’s doing so well.”