Surgery in the womb for spina bifida has stopped paralysis in dozens of babies

Dozens of babies with spina bifida have been spared paralysis and other life-limiting conditions after a cutting-edge procedure first carried out in the UK by a team of clinicians from UCLH, University Hospitals Leuven in Belgium and Great Ormond Street Hospital for Children NHS Foundation Trust (GOSH) was made available on the NHS. 

Spina bifida prevents the spine and spinal cord developing properly and can lead to paralysis, bowel, bladder and kidney problems.

Operating on babies between 23 and 26 weeks of pregnancy, instead of after birth, results in a much better outcome for the baby.

The procedure involves a team of up to 30 in the operating theatre, including fetal surgeons, neurosurgeons, anaesthesiologists, obstetricians, neuro-paediatric surgeons, radiologists, the scrub team, and neonatologists in case the baby needs to be delivered during the operation.

So far 32 babies have benefited from procedure since NHS England announced it would be available on the health service and the first surgery took place on the NHS in January 2020.

Helena Purcell, whose unborn baby was diagnosed with spina bifida, was operated in Leuven when she was 23 weeks pregnant.

She was originally told that her baby would likely be paralysed, incontinent, and would need a shunt in the brain.

Helena, who had become pregnant after six failed attempts at IVF, gave birth at UCLH to a baby girl called Mila in March 2021, three months after the surgery.

The schoolteacher thanked the NHS staff for all they had done, saying: “I cannot explain the massive difference the service has had for my family. The NHS doctors are heroes in my eyes, and the surgery they did is just mind-blowing. If it wasn’t for them then Mila would be paralysed. I am just so grateful that she has had this chance.”

Mila, who is now under the observation of Great Ormond Street Hospital, can move her legs, is fully continent and although she still has some fluid on her brain, is so far showing signs of good development.

The programme is commissioned by NHS England through a partnership between London and Belgium, with the long-established centre of excellence in Belgium sharing its expertise and support to develop a now world-class service in London.

Professor Stephen Powis, medical director for NHS England, said: “Spina bifida fetal surgery where neurosurgeons carry out complex spinal surgery on an unborn baby is routinely available on the NHS, and is just one example of the NHS leading innovative treatments across the world.

“As well as fighting a global pandemic the NHS continues to develop and offer these trailblazing services and continue to be there for patients.”

Professor Anna David, fetal medicine consultant at UCLH and service lead, said: “The service is streamlined to make it easy for patients and referring hospitals. Our coordinator based at UCLH manages referrals from the whole of the UK and devolved nations. Patients are then offered surgery either at London or Leuven, based on their geographical location. We are really pleased to offer this joined up service to smooth the patient journey as much as possible.”

Both centres work collaboratively through the NHS, with the long-established centre of excellence in Belgium sharing its expertise and experience to develop a now world-class service in London and members of the team often working across both sites.

Professor Jan Deprest, a consultant foetal surgeon at UCLH and University Hospitals Leuven, said: “Throughout the pandemic the spina bifida fetal surgery NHS service was available to women 24/7, crossing borders and covid lockdown restrictions to provide the best possible care for women and their unborn babies.

“With our teams in London and Belgium working collaboratively as one NHS centre, mothers can access the best world-class care and get the best chance for their baby’s future. “

Dominic Thompson, lead neurosurgeon at Great Ormond Street Hospital for Children NHS Foundation Trust (GOSH), said: “It’s been an incredible multi-institutional and multidisciplinary team effort to continue this collaboration between the London and Belgium centres, even despite the challenges of the pandemic.

“The procedure is complex, time-sensitive and not without its risks, but the significant and life-changing impact on babies, like Mila, and their families, cannot be overstated. At GOSH we continue to see many of the children who’ve benefitted from fetal surgery in our specialist spina bifida clinic for their after-care, and what we’ve noted is a reduced need for shunts and further invasive surgery, as well as improved mobility. This makes all the difference to the quality of their lives. ”

Kate Steele, chief executive at Shine, said: “Shine is delighted that Helena has had such a positive experience of fetal surgery for her baby with spina bifida. By commissioning this excellent service, the NHS has added an option for some parents expecting a child with spina bifida. We hope, going forwards, that every family who might benefit from fetal surgery, is given the opportunity to find out whether surgery is right for them, and that they are supported by their local service, as Helena was.”