Unborn baby undergoes surgery for spina bifida

A baby has undergone in-utero surgery for spina bifida
A baby has undergone in-utero surgery for spina bifida Photo: Facebook/Bethan Simpson

An unborn baby has undergone foetal repair surgery for spina bifidia while still inside her mother's womb.

"They took her out of my womb and popped her straight back in to stay there as long as she can," mum Bethan Simpson wrote on Facebook.

The baby girl, whose surgery was conducted by specialists from Great Ormond Street Hospital, is only the fourth baby in the UK to ever have the procedure while still in utero. 

As she recovers from the surgery, Ms Simpson is sharing her story, hoping to change perceptions around spina bifida, a condition where the the spinal canal does not close completely in the womb, noting that "it's not a death sentence". 

Spina bifida means "split or divided" spine and occurs in the first few weeks of pregnancy when the brain and spinal cord are forming.

"We were a success," Ms Simpson writes of the procedure which took place on 8 January. "Her lesion was small and she smashed surgery like you wouldn't believe. I'm fragile and sore but as long as she is doing fine that's all we care about. Baby girl is measuring to her head centiles now. She was below 5th before," she continues, adding, "our local Dr who scanned us compared our 20w to now and even she was in awe of what the surgery has done."

And while it isn't a cure, Ms Simpson is hopeful the surgery will allow their daughter "to have the best chance at a 'normal life."

It was during her routine 20-week scan that Ms Simpson discovered her baby's head "wasn't measuring right". Just 48 hours later, she and her partner Kieron were told that their daughter had spina bifida.

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​"Our first option was termination," she writes.

After undergoing scans on her little one's head and spine, the couple were given a number of other options beyond terminating the pregnancy. "We were offered continuing pregnancy, ending pregnancy or a new option called foetal surgery - fixing her before she is born," Ms Simpsons explains.

For the pair, the decision was clear. "We had to do it."

But despite agreeing to the surgery, Ms Simpson notes that she and her baby had to meet some "seriously strict criteria".

"Me and baby went through amniocentesis and MRI and relentless scans," she explains, before being approved for surgery before Christmas. "Our lives were such a rollercoaster for the next few weeks.

"I had the most recognised surgeons from around the world from UCLH and Belgium looking after me," Ms Simpson writes. And it was a success, with bub now kicking her "day in and day out".

"Sadly, 80 per cent of babies in England are terminated when their parents get told their baby has this condition,"  she continues. "It's not a death sentence. She has the same potential as every one of us. Yes there are risks of things going wrong but please think more about spina bifida. It's not what it used to be."

Since her surgery, Ms Simpson has shared post-op updates to  Facebook. And while three weeks later, she's still in pain, "physical pain you could not begin to understand," her baby is "growing well". "My waters and everything else are still on the right right track," she notes, adding that her daughter enjoys putting her umbilical cord in her mouth.

And she's a very proud mama.

"An unborn baby surviving surgery and we moan when we have cold," Ms Simpson notes. "We have no idea."

In Australia, approximately one in 500 babies are born with a neural tube defect (NTD) such as spina bifida, with approximately 150 babies born each year. While the exact cause is unknown, seven out of 10 cases of NTDs such as spina bifida can be prevented by women increasing their intake of folate to 0.5mg/day at least one month before conception and for the first three months of pregnancy.

The first Australian in-utero surgery for spina bifida was performed in Brisbane at the Mater hospital in 2016. At the time, Dr Glenn Gardener, director of Maternal Fetal Medicine, explained that in-utero surgery to repair spina bifida before birth is a complex procedure involving two patients at the same time.

"The mothers' abdomen and womb is opened and the baby's back is exposed, the spina bifida lesion is carefully dissected by the neurosurgeon and then closed over with the baby's own skin," Dr Gardener said of the procedure. "After that, the amniotic fluid is replaced and the womb carefully closed so that it is watertight."

Added Mater Neurosurgeon Dr Martin Wood, "The delivery of the fetus is very much like Glenn preparing a caesarean section. My part, of repairing the spina bifida defect, is very much like repairing on a baby that is born at term, except smaller. But you put it all together and it's quite a complicated entity."

Six more surgeries have taken place since then.

The procedure was informed by the groundbreaking "MOMS" study, a seven year trial which investigated the effect of operating on babies with spina bifida while they were still in the womb as compared to operating on babies after birth. The study compared 77 children with spina bifida who were operated on in pregnancy, to 80 babies who had spina bifida surgery after birth, and found that outcomes for bubs operated on while in the womb were "significantly" better. 

"The improvements were probably associated with the timing of the repair, which may have permitted more normal nervous-system development prenatally," the study authors wrote.