Plymouth toddler who had spinal surgery while still in the womb takes her first steps

October 6, 2016

Frankie Lavis was diagnosed with spina bifida after her 20-week scan
The condition caused a gap in her spine from it not developing properly
Surgeons operated on the baby’s spine during the 24th week of pregnancy
Her parents were told Frankie would still spend her life in a wheelchair
But she has defied doctors and can walk with a frame better than expected

Stephen Matthews For Mailonline

Published:
04:43 EST, 5 October 2016

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Updated:
05:56 EST, 5 October 2016

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A baby who was the first in Britain to have spinal surgery while inside the womb can walk with a frame – despite doctors saying she would spend her life in a wheelchair.

Frankie Lavis was diagnosed with spina bifida – a condition which caused a gap in her spine as a result of it not developing properly.

Surgeons operated on her while her mother was in the 24th week of pregnancy – just two weeks short of the time limit for such an invasive procedure.

It was touch and go whether she would survive and her parents, Gina, 37 and Dan, 39, from Plymouth, were told she would still spend life in a wheelchair.

But now aged two, Frankie has defied all expectations and can walk with a frame better than her parents ever imagined.

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Frankie Lavis was diagnosed with spina bifida – a condition which caused her spine to not develop properly. She became the first person from Britain to have spinal surgery while in the womb. Her family were told she would spend her life in a wheelchair, but now aged two, she has defied all expectations and can walk comfortably with a frame

Mrs Lavis said: ‘No-one else in the UK had this operation before us so it was a big step.

‘But we firmly believed that the best thing was to give her the best start and that is what it is.

‘There is a lot of risk but look what we have now. Just look at her now. It is amazing’

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The family discovered fault in the development of Frankie’s spinal cord and surrounding bones which left a split in the spine at the 20-week scan.

They diagnosed her with spina bifida and said they could either terminate the pregnancy or attempt to correct the fault after she was born.

After researching the condition, they found out about fetal spina bifida repair before birth – although it was surgery not done in the UK.

Doctors discovered a fault in the development of Frankie’s spinal cord and surrounding bones which left a split in the spine at the 20-week scan

It was touch and go whether she would survive the surgery, conducted in Belgium, which took two hours and involved 22 surgical staff. But the operation proved to be a success as she was able to move her lower body when she was born just 11 weeks later

They decided the in-utero operation would give their baby a better chance of reduced disability than having it after birth.

Mrs Lavis added: ‘At the time it was a difficult decision. We came in hoping to find out if we were having a boy or a girl but were told she had a major disability.

‘We know that she’s the first baby in the UK to have the surgery and we also know that there are many more babies who could qualify for the surgery but it’s not being offered as an option at the moment.

‘Maybe because it’s abroad, maybe because it’s a big operation and commitment but we knew it was the right option for us.’

The surgery was carried out by Professor Jan Deprest in Belguim, who leads one of only four centres in Europe that performs the operation.

It was approved by NHS European Cross Border Funding agency within 30 minutes of the request being made and the family paid their own travel and accommodation.

Parents Gina, 37, and Dan, 39, were told they could either terminate the pregnancy or attempt to correct the fault after she was born. but after researching the condition, they found out about fetal spina bifida repair before birth – although it was surgery not done in the UK

Surgeons had to cut through Mrs Lavis’ abdomen, uterus and into the amniotic sac that held Frankie to reach her spinal cord.

The operation took two hours and involved a team of 22 surgical staff.

Her back was then brought of the sac enough for it be operated on, while her face remained in the fluid to make sure she didn’t start to breathe on her own, which would have meant she had to be delivered prematurely.

WHAT IS SPINA BIFIDA?

Spina bifida is a fault in the development of the spine and spinal cord that leaves a gap in the spine.

Every year around 365 pregnant women in England and Wales are told they are carrying a baby with the condition.

As with Mrs Lavis, most cases are detected at the 20-week scan.

Frankie was diagnosed with the most common and most serious form of the disease, called myelomeningocele, which affects about one in 2,000 UK babies.

In myelomeningocele the spinal column remains open along the bones making up the spine.

The membranes and spinal cord push out to create a sac in the baby’s back.

This sometimes leaves the nervous system vulnerable to infections that may be fatal.

In most cases surgery is carried out to close the gap in the spine after birth

But damage to the nervous system will usually already have taken place, resulting in:

partial or total paralysis of the lower limbs
bowel and urinary incontinence
loss of skin sensation

To prevent bleeding, the uterine wall was stapled to the abdominal wall, which surgeons pushed back the bundle of foetal nerves into the space inside the vertebrae, where they would normally be.

Surgeons used an artificial skin patch to cover the wound in the baby’s back, over which natural skin would eventually grow.

And soon after birth, she was moving her legs – showing the operation was a success as the nerves in control of her lower body were working normally.

Two years on, Frankie has now surpassed all expectations to be able to walk with a frame better than her parents ever imagined.

She was this week taken back to Derriford Hospital in Plymouth so staff who care for her could see how she was getting on.

Her former consultant Dr Ross Welch said he was astonished at her progress.

He added: ‘The change is really quite remarkable knowing the diagnosis when we first made it for Frankie.

‘The outcome we predicted was she would never be independently mobile and would be in a wheelchair.

‘And to see her as she is now – walking and doing what any other child would do is astonishing.’

Every year around 365 pregnant women in England and Wales are told they are carrying a baby with spina bifida and most cases are detected at the 20-week scan.

The high risk of damage to the nerves and of disability caused by the condition means that more than 60 per cent of women choose to terminate their pregnancies.

The bones of the spine fail to close properly around the spinal cord, leaving the nerves within exposed and vulnerable to damage.