Doctors perform life-changing surgery on baby before birth

A Queensland baby diagnosed with spina bifida has received life-changing surgery — while still in his mother’s womb.

Mater doctors performed the complex surgery on Ethan McElhenny’s tiny body at just 24 weeks’ gestation by making incisions into mum Carla Sikes’ abdomen and uterus, enabling them to reach her unborn baby’s lower back to repair the spina bifida abnormality.

The Yeppoon mum-of-six and her partner Mick McElhenny said the 20-week pregnancy scan had revealed Ethan had spina bifida, but that they felt positive after doctors said they could operate.

The surgery aims to improve mobility and the chances that a child will be able to walk independently, among other potential benefits.

Ethan’s surgery was performed by Mater Mothers’ Maternal Fetal Medicine specialist team and led by its Director, Dr Glenn Gardener.

Gardener said families usually discover the diagnosis of spina bifida at their routine ultrasound scan and until 2016, when Mater first performed the groundbreaking surgery, parents had to wait until the baby was born for their child to be operated on.

Baby Ethan was born on 22 June, just three weeks after the surgery was performed, weighing a tiny 1.29 kg.

Sikes said while it was too early for doctors to give Ethan the all-clear, he had already shown he has full movement in his body “right down to his toes”.

Sikes said Ethan also suffered from hydrocephalus, a build-up of fluid in and around his brain often associated with spina bifida.

To relieve the pressure on his brain he required an operation to drain the fluid into the space between the skin of his scalp and the bone of his skull. This has caused him to have several bumps over his head.

“The swelling can be quite confronting to look at and it feels like jelly to touch,” she said. “The way he looks doesn’t bother me.”

After 11 weeks of around-the-clock care at Mater Mothers’ Hospital, Sikes and baby Ethan have now joined their family back home in Yeppoon and will return to Brisbane for follow-up medical appointments.

“No one at Mater told me to terminate. Dr Gardener made everything so much better, calmed me down and spent hours answering my questions,” Sikes said.

Dr Pita Birch, Mater Director of Neonatology, said Ethan’s prognosis was still uncertain, but “made all the better for being born in a large, loving and supportive family”.

“His leg movement is excellent and he does appear to have good continence,” Birch said.

“Ethan was born extremely premature and is at risk of the complications of prematurity, including disability in movement, thinking, communication and behaviour — but despite his somewhat rocky course, he has done remarkably well, and I remain optimistic,” Birch said.

Sikes will never forget when she asked Dr Birch what Ethan’s “worst-case scenario” was.

“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,” she said.

“His words have given us all such strength.”

Spina bifida affects one in 2000 pregnancies in Australia and the Sikeses are sharing Ethan’s story during Spina Bifida Awareness Month to give hope to other parents whose babies have been diagnosed with the condition.

Image credit: Supplied.