Life Video

By Niamh Shackleton

 

Squealing with delight as her mum tickles her feet, little Verity Tugwell is the picture of a happy, healthy baby.

But before she was born, her parents, Sophie and Dan, were warned she may be paralysed after being diagnosed with spina bifida – and the tiny tot underwent a pioneering operation before she was even born.

Incredibly, Verity is now showing no signs of the condition after specialist medics operated on her inside the womb -and is now a happy and healthy eight-month old.

She was one of the first British babies to undergo the pioneering surgery.

Playing with her daughter at home in Bideford, Devon, mum-of-three Sophie said: “We were heartbroken when we were told about Verity’s spina bifida.

“We had gone in for a scan in the hope of finding out the sex of the baby, but were hit with the heartbreaking news that something wasn’t quite right.

“The nurse told us she had early signs of spina bifida –  I can still remember the look on the pregnancy scanner’s face when she noticed it, it was a horrible feeling.

“After Verity’s diagnosis, we were given three options, we could choose to terminate the pregnancy, have a post-natal spine closure – which didn’t really help any potential problems – or we could try fetal surgery.

“We knew from the get-go that we didn’t want to terminate the pregnancy and we wanted to give the baby the best chance at life.

“There wasn’t guaranteed success with the surgery once she was born, so my motherly instinct kicked in and I decided I wanted to do all I could for her whilst she was still in my tummy.”

Spina bifida is a condition that affects 700 babies born every year, where the spinal cord and spine do not develop properly, leaving part of the spinal cord exposed, which can cause paralysis, learning difficulties and incontinence.

Almost a year on from the surgery, there has now been seven women operated on in London and 15 in Leuven,m Belgium where Sophie had her surgery.

A new surgical technique – trialled by just a handful of hospitals around the world – enables surgeons to cut through the mother’s abdomen and womb, similar to carrying out a caesarean section, before a neurosurgeon cuts away the protruding part of the baby’s spine without removing it from the uterus.

The baby, uterus and mother’s abdomen are then sewn up and the pregnancy is allowed to progress.

Sophie and Dan needed to act quickly as the procedure has to be done before 26 weeks gestation and Sophie was already 23 weeks along.

Although NHS doctors planned to carry out the surgery, they were forced to transfer Sophie to medics in Belgium, who had greater experience of the operation, because of the position of her placenta, which made surgery especially difficult.

Sophie underwent surgery at 24 weeks’ pregnant last November – and gave birth to Verity in January 2019, at 34 weeks.

And eight months later,  Verity has all feeling in her legs  – something doctors thought would never happen – and she even giggles every time she is tickled on her feet.

Sophie, 33, and Dan, 31, who were already parents to twins, Connie and Bertie, four, are over the moon that the NHS funded surgery was a success and are now sharing their story to help other parents.

Sophie said: “I was initially supposed to be having the surgery in London but because of issues – not everyone is eligible for the surgery so I was just over the moon to be able to have it.

“The surgeon who was supposed to be doing it in London was from Belgium and asked Dan and I to go there where he and his team of experienced doctors in this field, could do the procedure.

“Not many people have had this kind of surgery in the UK so not as many doctors are experienced in doing it.”

To get to Belgium, Sophie and Dan had to fundraise to get themselves to Belgium as they had to pay for flights and accommodation.

Despite the risk of Verity being born early because of the procedure, Verity went on to be born at 34 weeks on January 25, 2019.

Now, eight months later,  Verity is doing great and both Sophie and Dan are over the moon they took the risk.

Sophie said: “It was a very stressful, and nerve-wracking time but I’m so glad we decided to do it.

“Verity is doing amazingly well and even has ticklish feet which means she has all feeling in her legs – something which both we and doctors worried would never happen.

“We are really keen to raise awareness of the options that are open to people in the same position.

“It’s a shame that 80 per cent of parents who find out their unborn baby was spina bifida choose to terminate the pregnancy – I think this is largely down to them not fully knowing the options that are available to them.

“If we can help any parents who think there is no option for them, then it’s all been worth it.

“It’s crazy to think we’re only one of five people in the UK to have it – but it’s great the NHS are looking to hopefully make it more available to patients.”

Following her experience, Sophie set up a Facebook group for other families with babies diagnosed with spina bifida to help to help them called Fetal Surgery for Spina Bifida UK.