When her mother learned of her condition while still pregnant with her, baby Mila became one of dozens of babies with spina bifida who have been treated in the womb with a revolutionary procedure, according to the Great Ormond Street Hospital (GOSH) for Children in London.
Spina bifida is a congenital malformation which occurs in the 4th week post-fertilisation where the embryonic neural tube fails to close, leaving the spinal column split (bifid) and open, exposing the spinal cord. Below the level of the damage on exposed spinal cord, there can be motor and sensory neurological deficit. Orthopaedic abnormalities such as clubfoot are possible. Additionally, the higher up the damage is on the spine, the higher the mortality rate.
Helena, a mother from the UK who had become pregnant after six IVF attempts, at 20 weeks discovered her baby had spina bifida. A scan showed a huge open lesion on her baby’s lumbar sacral region, exposing her spinal cord. But Helena was aware of pioneering open foetal surgery carried out by the NHS following a diagnosis with a previous pregnancy, and was determined to apply for it.
“I knew if I didn’t get the operation the quality of her life would be very different,” Helena told BBC News.
“It was a very large lesion on her back and half of her spine was exposed. They said that it was likely she will be paralysed, incontinent and will need a shunt to drain the fluid from her brain later on.”
A US study, as reported previously on QuickNews, showed that the benefits of foetal repair surgery continued into later childhood, with those having had foetal repair being six times more likely to go to the toilet unaided than those who had surgery after birth, and were 70% more likely to walk unaided, and twice as likely to walk without braces. They were also more likely to use self-care skills such as brushing teeth and using a fork.
“The procedure is complex, time-sensitive and not without its risks, but the significant and life-changing impact on babies … and their families, cannot be overstated,” explained Dr Dominic Thompson, lead neurosurgeon at GOSH. “This makes all the difference to the quality of their lives.”
Twenty-five clinicians from GOSH and University College London Hospitals, as well as University Hospitals Leuven in Belgium, were involved in Helena’s surgery, according to BBC News.
The procedure generally involves administering an anaesthetic to the mother, which passes to the foetus through the placenta, and then cutting through the abdomen and uterus to reach the foetus’s spine. Neurosurgeons then take off any skin attached to the exposed spinal cord and place the cord inside the spinal canal before stitching the tissues closed.
In her 23rd week of pregnancy, she received surgery at a specialist hospital in Belgium, and three months later, she gave birth to her daughter Mila at University College London Hospital. According to GOSH, some excess fluid still remains on the newborn’s brain, but Mila is showing signs of healthy development.
“She can move her legs, and she’s got feeling to her toes so it’s absolutely amazing,” Helena told BBC News. “I’m just so grateful to the surgeons who’ve done this operation because her life would look very different without it.” Including Mila, the team has performed the same operation on 32 babies since January 2020.
“We’re very excited about the next phase of the prenatal surgery for babies with spina bifida, including less invasive approaches,” Dr. Paolo De Coppi, part of the fetal surgical team for spina bifida, said in the statement.
“As with any new approach, we first need to fully understand the benefits and risks involved to mother and baby,” De Coppi noted. “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.”
Source: Live Science