Ausnew Home Care | In-utero surgery for spina bifida reduced Ethan's chances of disabilities

In-utero surgery for spina bifida reduced Ethan's chances of disabilities

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Ethan McElhenny and his mum Carla Sikes both bear the "battle scars" of a rare and complex surgery conducted while he was still inside her womb.

Neurosurgeon Martin Wood operated on Ethan at 24 weeks' gestation at the Mater Mothers' Hospital in Brisbane after an ultrasound revealed he had spina bifida, a condition affecting about one in 2,000 Australian pregnancies.

It's delicate surgery and Ethan only measured about the length of an ear of corn — and weighed less than 1 kilogram — at the time.

"The baby … has a lower blood volume than when it's bigger and stronger and heavier," Dr Wood said.

"The tissues are more fragile. The margin for error is much smaller. It certainly is harder in lots of ways."

And there are more people in the operating theatre, with separate teams focusing on the mother and baby.

So much so, Dr Wood likened an in-utero operation as something akin to playing "surgical twister".

"There's arms everywhere, people in the way. It's a bit of a contortion act," he said.

Baby Ethan McElhenny. Ausnew Home Care, NDIS registered provider, My Aged Care
Ethan with parents Mick McElhenny and Carla Sikes after being born premature.(Supplied)

Ethan's spinal cord had failed to close properly, resulting in part of it being exposed in a fluid-filled sac, protruding from his lower back.

Ms Sikes and partner Mick McElhenny, who have five other children – Blake, 14, Mason, 8, Flynn, 6, Pelia, 4, and Jorja, 2 – learned about Ethan's spina bifida about halfway through the pregnancy.

The couple, who live in Yeppoon, in central Queensland, found out he was a boy at the same appointment.

"It just felt right to know who was fighting for their life inside my tummy," Ms Sikes said.

"After I got the gist of the surgery and the possible outcomes and the journey that both Ethan and I were on, I thought I'd like to name him something that meant 'strong'.

"I left that appointment and just Googled on my phone baby boys' names meaning 'strong' and Ethan was number one on the list. I always loved the name Ethan."

Ethan McElhenny with his siblings Mason, 8, Pelia, 4, Blake, 14, Jorja, 2, Flynn, 6.
Ethan McElhenny with his siblings (left to right): Mason, 8, Pelia, 4, Blake, 14, Jorja, 2, Flynn, 6.( Supplied: Mater Hospital)

At that stage, she had no idea how strong her youngest son would need to be.

Doctors had hoped to be able to deliver Ethan through a planned caesarean section at the Mater Mothers' Hospital at 36 weeks gestation.

But on June 22, just 20 days after the in-utero surgery, he was born three months early via an emergency caesarean after his mother's waters broke.

He weighed just 1.29kg.

Two days later, he needed more surgery after developing a hole in his bowel, a complication of prematurity.

Still not yet four months old, he's also had two surgeries to prevent the build-up of too much fluid on his brain after developing hydrocephalus, a condition related to his spina bifida.

Baby Ethan McElhenny with his mother.
Ethan was born weighing 1.29 kilograms.(Supplied)

Ethan has a tube running internally from his brain down to the abdomen to drain excess fluid.

"He has a lot of battle scars on his tiny little body," Ms Sikes said. "I guess that just tells his story, his amazing story.

"He's a real little miracle, we all feel."

Doctors will need to wait until he's older to determine how successful Ethan's spina bifida operation in the womb has been.

At this stage, the signs are positive.

He has full movement of his legs down to his toes.

Mater Mothers' Hospital neonatology director Pita Birch said Ethan's bladder control also looked "pretty normal" so far.

"The rehabilitation team will see him intermittently, but he actually doesn't need a lot of rehab," Dr Birch said.

"He's doing extremely well."

Ethan McElhenny with his Mum Carla Sikes
Ms Sikes brought Ethan home to be with the rest of the family in Yeppoon.(Supplied: Annette Dew)

Ms Sikes has a tattoo over her heart which says: "Laugh without fear of the future."

The 33-year-old said she had the tattoo done after having a miscarriage in 2017 but continued to draw strength from those words during Ethan's journey.

"Obviously, we don't know what the future exactly looks like with Ethan and what he can do," she said.

"But at the end of the day, he's still our son. We're going to love him no matter what. I would not change him."

Five willing helpers

The mother of six said she had five willing helpers whenever she needed assistance with Ethan after bringing him home to Yeppoon from hospital late last month.

"Everyone fights over who gets to hold him and who gets to bath him," Ms Sikes said of Ethan's siblings.

"To them, he's just perfect."

Ms Sikes said her faith in God had helped sustain her through the months Ethan was in hospital and before his birth.

"It was hard," she said.

"I just relied on 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 family."

Dr Martin Wood headshot.
Neurosurgeon Martin Wood operated on Ethan in-utero.

Ethan was the 12th baby to have in-utero surgery for spina bifida at the Mater Mothers' Hospital, the only facility in Australia and New Zealand that does the operation.

The first such procedure at the Mater was in 2016.

Before then, the operation would have been done after he was born, with the likelihood of him having many more complications.

Prerequisites for rare in-utero surgery

Dr Wood said the in-utero surgery was not without its risks.

Babies are much more likely to be born prematurely and there's a chance of them being delivered at the time of the operation.

Their mothers are at higher risk of requiring a blood transfusion after the birth and of other complications.

Dr Birch also warned not every spina bifida baby was eligible for in-utero surgery with both mother and baby having to meet specific criteria.

Mothers who have had a previous pre-term birth are not eligible for the surgery.

Other contraindications include women with a shorter-than-normal cervix and those who have had a placental abruption — when the placenta detaches from the inner wall of the womb before a baby's delivery.

In babies who are eligible, the benefits can be significant.

The Mater's director of maternal foetal medicine, Glenn Gardener, said the in-utero surgery aimed to increase the likelihood that a child would walk unaided.

Ethan now weighs 3,760g and is described by his Mum as a contented baby, despite his life's challenges.

"I know I would complain if I had to go through what he has gone through," Ms Sikes said.

"He's just conquered everything life has dealt him. He's not a bother at all. He's doing so well."


Source: ABC

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