Plymouth mother is first UK woman to have prenatal repair of open spina bifida funded by NHS

The first operation to repair open spina bifida in utero funded by the NHS took place in June this year, with the baby born at the end of August in Plymouth.

Fetal medicine specialists from England, Belgium, and Switzerland performed the operation on Gina Beddoe, 35, from Plymouth, at Leuven teaching hospital in Belgium after spina bifida in the fetus was diagnosed in Derriford Hospital in Plymouth at 19 weeks of pregnancy.

The operation, which took two hours and involved 22 surgical staff, was completed at 24 weeks and two days, and Beddoe was discharged back to Plymouth one week later on nifedipine prophylaxis. It was the ninth such operation carried out at the Belgian centre, one of only two units in Europe that offer prenatal open surgery for spina bifida.

Approval for the operation, which cost €10 455 (£8270; $13 020), was given by NHS England within 30 minutes of the request being made.

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Consultant Ross Welch with Gina Beddoe, Dan Lavis, and Frankie at Derriford Hospital

Derriford Hospital

Ross Welch, the consultant in fetomaternal medicine at Derriford Hospital who coordinated Beddoe’s care, believes that more UK patients might benefit from the procedure if they knew about it and that eventually a centre might be established in England to provide the procedure.

In the meantime, however, he told The BMJ that he believed that it would be most cost effective for patients to use either the centre in Belgium or the Zurich Centre for Fetal Diagnosis in Switzerland, which collaborate closely.

“At the moment I think we should feed Belgium and Zurich with cases from the UK until their capacity is met, not least because it is going to be significantly cheaper than setting up a new centre here,” said Welch. “We might find that there are only 20 women in the UK a year who would want this operation, which means we would have one unit doing a procedure every two to three weeks.”

He added, “When the numbers of NHS patients likely to request this procedure are better known, a much better financial and governance argument may be made for a UK centre, and the specialists from Belgium and Switzerland could then mentor a UK centre.”

Spina bifida is diagnosed in one in 2000 pregnancies in the UK, and more than 60% of couples opt for a termination.

The new option of fetal repair of open spina bifida became more accepted after the Management of Myelomeningocele Study, published in the New England Journal of Medicine in 2011, which was stopped early because of the benefits seen in infants.1 The study found that closure of spina bifida in utero halved the need for a shunt for hydrocephalus in the 12 months after birth from 82% of cases to 40% (relative risk 0.48 (97.7% confidence interval 0.36 to 0.64)). By 30 months infants who had prenatal surgery were also more likely to be able to walk without assistance than those who had surgery after birth (42% versus 21%; relative risk 2.01 (95% confidence interval 1.16 to 3.48)). The adverse effects of prenatal surgery include preterm delivery and uterine dehiscence.

Beddoe had a baby daughter delivered by caesarean section at 35 weeks and two days at Derriford Hospital. Because of hydrocephalus the baby had a shunt fitted three weeks later. She has movement and strength in her legs, and the indications are that her bowel, rectal, and bladder functions are normal.

Jan Deprest, professor of obstetrics and gynaecology at the University of Leuven, who heads the centre where the operation took place, pointed out that the operation is high risk for mother and baby. The surgery requires the mother to be partly sedated for two days afterwards; and, because of the increased risk of premature delivery, the mother must take tocolytic treatment, with its associated side effects.

“We advise mothers not to work after the operation, to take bed rest for at least a couple of weeks, and to avoid strenuous activities—so for some families surgery will not be an option,” said Deprest. “Delivery by caesarean section is always necessary, which leads to a second scar in the uterus and weakens the uterus and has its own risks. We also advise women to avoid pregnancy for at least two years after the operation, which may not be compatible for some.”

Deprest also pointed out that fetal repair of spina bifida should not be seen as an alternative to termination and should be offered as an option only once couples have decided to continue with the pregnancy.