A mum has described the excruciating moment she agreed for her baby to be ‘born twice’ so he could undergo a life-saving surgery.
Jessie Backshall, 30, and her wife Patricia Backshall, 45, were thrilled when they discovered they were having a child.
But their joy quickly turned to terror when Jessie’s 16-week scan revealed their unborn son had spina bifida, a condition in which the spinal canal does not close completely.
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This results in changes to the brain, as well as severe trauma-related injuries to the nerves on the lower half of the body.
The couple, who live in Western Australia, were initially told their unborn son would likely have a lower-than-average IQ and may never walk unassisted.
They were also informed that 75% of Australians opt for termination in cases of spina bifida.
But after choosing to keep their son, they embarked on the most emotional and hopeful journey of their lives.
“We walked away from that initial appointment feeling lost,” Jessie told What’s The Jam.
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“We wanted this little boy so badly, but we also wanted to make sure he had a reasonable quality of life.
“Later, Trish and I sat in bed crying. I turned to her and asked, ‘Can we keep him?’ to which she replied simply, ‘Yes.’
“There was no going back from that point. We were going to do everything in our power to give him the best chance.”
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Jessie spent hours researching spina bifida on the internet and discovered a lot of major hospitals in the US offered surgery before a child was born.
She contacted dozens of hospitals in Australia asking if they could offer the same, initially to no avail.
But eventually, she found one that agreed.
The operation involves opening the uterus, exposing the spina bifida without delivering the baby, closing the defect and then repairing the uterus to leave the baby safely inside.
In the surgery, the foetus is exposed while the mother is under anaesthetic – similar to a caesarean section (or C-section) – which is why it’s commonly called being ‘born twice’.
Jessie said: “I’d seen the difference between the kids who had closure surgery post-birth and those who had it in utero and it was too big to ignore.
“Time was of the essence as this surgery must be performed after 22 weeks gestation and before 26 weeks. We were now 23 weeks.
“We were told of the risks and advised the biggest is preterm labour. They told us If Trish’s waters broke during the operation, they would not resuscitate our baby. Every hope we had was on this surgery.
“In January last year, our son Otis was born for the first time. Trish’s uterus was taken out of her belly, Otis’s back and bottom were pushed to the top, and an incision was made to close the hole in his spine.
“The surgery itself took six hours and was a huge success.”
Three months later in April, Otis was born for the second time with a perfectly healed scar on his back.
But his journey wasn’t over.
The vast majority of individuals with spina bifida also have a condition called hydrocephalus, where excessive fluid accumulates in the brain leading to increased pressure and, potentially, brain damage.
Doctors hoped Otis’s surgery would prevent him from needing a shunt – a tube to drain the fluid – but when he was five months old, it was determined he would have to have one placed.
Then in March this year the shunt malfunctioned.
Jessie said: “He went limp in my arms.
“I couldn’t wake him and his breathing was shallow.
“I felt as though time had stood still and I was counting in 30 second increments that the ambulance was still not here, I remember watching him get worse by the minute and still not being able to hear the sirens and thinking “is he going to die in my arms”.
“Trish was still rushing home from work and I was becoming increasingly worried she would walk through the door and it would be too late, I was terrified.
“I called an ambulance and we were transported with lights and sirens to the hospital. Otis was rushed into surgery and within hours they found a blood clot in the valve of his shunt and debris completely blocking it.”
Thankfully, Otis made a full recovery, and now 14-months-old, he is a happy and thriving little boy.
Jessie, a stay-at-home mum, said: “Otis proved the statistics wrong. He’s been reaching all his milestones on time and was crawling by a ‘normal’ age.
“The future for Otis is his for the taking.
“We were told it could be another year before he walks. We were told he will need walking assistance. We’ve been told a lot of things and Otis loves to prove them all wrong.
“We know he will walk in his own time and we know we will be by his side every step of the way.”
The family are now sharing their story to give hope to others going through something similar.
Jessie added: “The soundtrack to any full-time mother’s (or parent’s) life, let alone a medical parent, is loneliness.
“But there is also hope.
“I wanted to provide a real story and ongoing updates so other parents could feel seen on the days they struggle.
“I also wanted to shed light on spina bifida as a whole, how misunderstood and under-researched it is, and how life doesn’t look like the miserable picture you’re painted on diagnosis day.
“Otis is now learning to walk by cruising the furniture, he is exploring his words with lots of chatter and he is the happiest little being.
“He is doing everything we were told he wouldn’t – and more. He is a miracle in every sense of the word.”
