Emily Ellis flicks through photos of her four-day-old baby, Austin, on her phone. “He is perfect,” she says with the certainty of any new parent. But the journey to his arrival has been more complicated than most. Austin has spina bifida and is one of a growing number of babies in the UK to have undergone a pioneering foetal surgery that is transforming outcomes for infants with the condition.
Before his birth, surgeons at King’s College hospital operated on Austin’s spinal defect while he was still inside the womb and the Guardian was given unique access to observe the same procedure on another mother and baby from inside the operating theatre. The procedure is not a cure, but could be the difference between Austin walking or not.
“It’s a landmark step in managing patients with spina bifida and improving outcomes and quality of life,” says Bassel Zebian, a consultant neurosurgeon at King’s, who led the surgical team.
In spina bifida, the spine does not close fully during development, leaving a hole in the back and the spinal cord exposed. Until recently, parents had to wait until a baby was born for corrective surgery. But changes in the amniotic fluid later in pregnancy can exacerbate nerve damage and there is compelling evidence that operating during the second trimester can improve outcomes, doubling the numbers of babies who go on to walk, and reducing the risk of hydrocephalus, where too much fluid builds up in the brain.
Emily and her husband, Simon, were given the spina bifida diagnosis after the routine 20-week scan showed their baby’s spinal cord was not forming correctly. “The hardest thing was finding out,” says Emily. “You feel like you’re grieving.”
The news was a shock, but the couple decided to proceed with the pregnancy and that foetal surgery would give their baby the best chance possible. Emily underwent the operation at 27 weeks of pregnancy at King’s, one of just two centres in the UK that offers the procedure, and the only one that does it laparoscopically through the uterus.
Two floors down from the neonatal intensive care unit (Nicu), where Austin has just had his first bottle-feed, the Guardian observed another mother and baby undergo the procedure, an experience that is not for the faint-hearted.
Zebian will operate alongside two foetal medicine consultants, Marta Santorum-Perez and Matthew Brown, and at least a dozen other specialists including anaesthetists and scrub nurses crowd into the theatre. The pregnant patient lies anaesthetised and – besides her bump – entirely hidden beneath surgical sheets.
An incision is made across the abdomen and the uterus, a glossy sphere, lifted outside the body. The surgeons make three small incisions that will be used as surgical ports. First, though, the amniotic fluid is drained and the uterus is inflated with carbon dioxide gas to stop the baby floating around during surgery.
Relaxed chatting makes way for hushed concentration as the laparoscopic camera enters the port, illuminating the uterus from within like a red globe marbled with vessels. The baby’s world comes into focus on three large screens, which will be used to guide the surgery. A large blister-like bubble, the spina bifida defect, is visible on the baby’s back.
A pair of surgical tools are threaded through the two ports and Zebian begins by cutting away the blister to reveal skin and tissue that is tethered to the spinal cord. He cuts it away with incredible precision via the two keyhole pivot-points. Once the spinal cord has been freed, it settles back into the spinal canal and Santorum-Perez stitches a protective biocellulose patch over it and a second silicon patch to encourage skin to regrow.
The mother is the 22nd patient to receive the surgery at King’s and, since the first procedure four years ago, their technique has evolved. Initially the operation was done entirely laparoscopically, but a hybrid approach (with the uterus exposed) appears to reduce the chance of premature delivery.
Prof Kypros Nicolaides, the director of the Harris Birthright Centre and consultant in foetal medicine at King’s, who put together the surgical team at the hospital, believes society has become more supportive of those born with disabilities and that this has created a stronger desire to push the boundaries of medicine to improve treatments. “Parents feel they would do anything to improve their outcome,” he said. In the case of spina bifida, most children will still have some paralysis but mobility is likely to be improved.
After more than four hours on the operating table, the uterus is refilled with amniotic fluid and resealed. The expectant mother, if all goes to plan, will be allowed to return home in a few days.
Back in Nicu, Austin is doing well: he is breathing by himself, taking feeds from a bottle and kicking his legs – a crucial early sign of mobility. His four-year-old brother, Harry, is yet to meet him but the family hope to take their new baby home soon. “He’s here and he’s safe and we’re just taking every day as it comes,” Emily says.
