A mother has shared the intense experience of making the heart-wrenching decision for her baby to be “born twice” to undergo critical surgery.
Jessie Backshall, 30, and her wife Patricia Backshall, 45, were overjoyed upon learning they were expecting a child.
However, their excitement turned into fear when a 16-week scan revealed their unborn son had spina bifida, a condition where the spinal canal doesn’t fully close. This can lead to brain changes and severe nerve damage in the lower body.
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Residing in Western Australia, the couple was initially told that their son might have a lower-than-average IQ and could struggle to walk independently.
They also learned that 75% of Australians facing a spina bifida diagnosis choose to terminate the pregnancy. Determined to keep their son, they embarked on an emotionally charged and hopeful journey.
“We left that initial appointment feeling completely lost,” Jessie shared with Need To Know.
“We wanted this baby boy so desperately but also wanted to ensure he had a decent quality of life. Later, while crying in bed, I asked Trish if we could keep him, and she said yes without hesitation. From that moment, we were committed to giving him the best chance possible.”
Jessie dived into research about spina bifida and found that many major US hospitals offered prenatal surgery for the condition.
She reached out to numerous hospitals in Australia and finally found one that could perform the surgery.
The procedure involves opening the uterus, exposing and correcting the spina bifida without delivering the baby, then repairing the uterus to keep the baby safely inside.
This operation is often referred to as being “born twice” because the fetus is temporarily exposed during surgery.
Jessie explained, “I saw a significant difference between children who had the surgery post-birth and those who had it in utero. Time was critical since the surgery needed to be done between 22 and 26 weeks gestation, and we were at 23 weeks. We were aware of the risks, including preterm labor. If Trish’s water broke during the surgery, they wouldn’t resuscitate our baby. Our hopes rested on this procedure.”
In January last year, their son Otis was born for the first time. Surgeons took Trish’s uterus out of her body, moved Otis’s back and bottom to the top, and made an incision to close the spinal defect. The six-hour surgery was a success.
Three months later, in April, Otis was born again, this time with a perfectly healed scar on his back. However, his challenges were far from over.
Most individuals with spina bifida also develop hydrocephalus, where excessive brain fluid increases pressure, potentially causing brain damage.
Although doctors hoped Otis’s surgery would eliminate the need for a shunt to drain this fluid, he required one at five months old. Then, in March, the shunt malfunctioned.
Jessie recalled, “He went limp in my arms, and his breathing was shallow. Time felt like it stood still as I waited for the ambulance, fearing he might die in my arms. Trish was rushing home from work, and I was terrified she might be too late.
We were taken to the hospital with lights and sirens, and Otis was rushed into surgery, where they found a blood clot and debris blocking his shunt.”
Fortunately, Otis fully recovered. Now 14 months old, he is a thriving, happy boy.
Jessie, a stay-at-home mom, said, “Otis has defied the statistics. He’s reaching all his milestones on time and started crawling at the typical age. His future is bright.
Although we’ve been told it might be another year before he walks and that he’ll need assistance, Otis loves proving people wrong. We know he will walk in his own time, and we’ll be there every step of the way.”
The family is now sharing their story to inspire others facing similar challenges. Jessie added, “The life of a full-time parent, especially a medical parent, can be lonely, but there’s hope. I wanted to share our ongoing journey so other parents feel seen on tough days.
I also wanted to raise awareness about spina bifida, how misunderstood and under-researched it is, and how life doesn’t match the bleak picture often painted on diagnosis day.
Otis is learning to walk by cruising along furniture, exploring words with lots of chatter, and he’s the happiest little soul. He’s doing everything we were told he wouldn’t and more. He is truly a miracle.”
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