Dozens of babies with spina bifida have been spared paralysis and other life-limiting conditions after undergoing surgery in the womb in a cutting-edge procedure made available on the NHS.
The first two surgeries in the UK were performed by teams from Great Ormond Street Hospital (GOSH) and University College London Hospitals (UCLH), and involved repairing the damaged spinal cords of babies in the womb.
The programme is commissioned by NHS England through a partnership between GOSH, UCLH and the University Hospitals Leuven in Belgium. So far 32 babies have benefited from the procedure, and clinical teams from GOSH have been involved in more than half of these life-changing operations across London and Leuven. In addition, GOSH looks after a number of the children in its specialist spina bifida clinic, after they’re born.
What is spina bifida?
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 better outcome for the baby. This procedure is available at The Centre for Prenatal Therapy, which was created by GOSH, UCLH and UCL with support from Great Ormond Street Hospital Children’s Charity (GOSH Charity).
Thanks to funding from GOSH Charity, clinicians were also able to travel and be trained by experts from University Hospital Leuven, and benefited from close links with the Children’s Hospital of Philadelphia where the team led by N Scott Adzick pioneered this operation.
Through careful coordination, the operations continued during the pandemic, ensuring that eligible families did not miss out on this life-changing opportunity.
Dominic Thompson, Lead Neurosurgeon at 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."
Six-week-old Mila is one of the patients to have benefitted from this pioneering surgery during the pandemic. Mila, short for ‘milagro’ which translates to miracle in Spanish, underwent prenatal surgery for spina bifida before being born in March via C-section in London.
Right before Christmas and at 23 weeks pregnant, her mum, Helena, travelled to University Hospital Leuven, Belgium, for the life-changing procedure where Mila's spinal cord was operated on while she was still in the womb. During the procedure vital nerves were repositioned and a large lesion was closed.
Helena, who had become pregnant after six IVF attempts, discovered her baby had spina bifida at 20 weeks. A scan revealed a huge open lesion on Mila's lumbar sacral region where the spinal cord was exposed. She was told the baby would likely be paralysed, incontinent, and would need a shunt in her brain. But aware of pioneering open fetal surgery carried out by the NHS following a diagnosis with a previous pregnancy, Helena was determined to see if her baby could qualify.
Helena, who works as a Spanish teacher in a secondary school, explained: "I've seen the impact that spina bifida can have on a person's life within our wider family. Although the prospect of open surgery was scary, I had total faith in the medical teams and felt benefits outweighed the risk."
Mila is now under the observation at the spina bifida clinic at GOSH. She can move her legs, is fully continent and although she still has some fluid on her brain, is so far showing signs on good development.
Our Incredible NHS
The procedure involves a team of up to 30 in the operating theatre, including foetal surgeons, neurosurgeons, anaesthesiologists (one for the mother one for the baby), obstetricians, neuro-paediatric surgeons, radiologists, the scrub team, and neonatologists in case the baby needs to be delivered.
Professor Stephen Powis, Medical Director for NHS England, said: “This innovative procedure whereby surgeons are able to fix a baby’s spinal cord while they are still in a womb is now routinely available on the NHS, and is yet another example of our health service leading innovative treatments across the world.
“As well as fighting a pandemic, treating hundreds of thousands seriously-ill people with Covid-19 and delivering the biggest vaccination programme in health service in history - the NHS continues to increase the number trailblazing treatments for patients which is a remarkable achievement by NHS staff.”
All of the centres worked 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 the sites.
Professor Jan Deprest, a consultant foetal surgeon at University Hospitals Leuven in Belgium 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. “
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.”
While this pioneering fetal surgery program is now open, doctors and scientists at GOSH are continually working to improve the outcomes for children before they are even born, developing cutting-edge research that could one day become common practice.
NIHR Professor Paolo De Coppi who is a Consultant Paediatric Surgeon at GOSH, Head of Surgery Unit at UCL Great Ormond Street Institute of Child Health (ICH) and part of the fetal surgical team for spina bifida is working with researchers on the next generation of fetal surgery in the womb.
Professor De Coppi said: "We're very excited about the next phase of the prenatal surgery for babies with spina bifida, including less invasive approaches. We are also conducting extensive research and training to better understand what surgery or treatment a child may need in advance during pregnancy.
"As with any new approach, we first need to fully understand the benefits and risks involved to mother and baby. While we look to make these future procedures as safe as possible, what is clear is that prenatal surgery for patients with spina bifida leads to better outcomes."
As GOSH’s Head of Stem cell and Regenerative Medicine and Deputy Lead of the NIHR GOSH BRC Structural Malformations theme, Professor De Coppi recently worked with research teams form The Hospital for Sick Children to show how we can help children’s bodies to heal themselves, using stem cells and their products to regenerate damaged lung and stomach tissue while still in the womb. You can read more about this latest work here.
GOSH Charity is currently funding further research to enable developments in fetal surgery for spina bifida. Original research into the procedure is also underpinned by support from the NIHR Biomedical Research Centres at UCLH and GOSH.