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NICE supports procedure to treat spina bifida on unborn babies

Guidance insists only specialists carry out innovative pre-birth operation

Adrian O'Dowd

Thursday, 26 September 2019

A procedure carried out on unborn babies with spina bifida could improve their neurodevelopment if carried out by well-trained specialists, according to draft guidance published today.

For its new guidance, the National Institute for Health and Care Excellence (NICE) looked at two operations for babies with open neural tube defect – one, involving surgically opening the uterus to operate on the foetus inside (open repair) and the other carried out through keyhole surgery to reach the unborn baby.

These operations were assessed by NICE’s interventional procedures advisory committee, which makes recommendations on which procedures are considered best clinical practice for the NHS. These recommendations are open for consultation until 24 October.

An open neural tube defect happens while the baby is developing in the uterus. Part of the spinal column does not close properly, leaving a gap that exposes the spinal cord and nerves to the outside of the body which results in the baby being born with spina bifida, which may cause lifelong disability.

Most cases of spina bifida are detected during the mid-pregnancy anomaly scan, which is offered to all pregnant women between 18 and 21 weeks of pregnancy.

If tests confirm a baby has spina bifida, options including surgery and termination are discussed with the parents.

While surgery can be used to close the opening in the spine, in most cases of spina bifida the nervous system will already have been damaged.

The committee said the evidence on the open repair showed serious but well recognised safety concerns for the mother and baby, but found it worked well enough for it to be used in the NHS as long as it was done in specialised centres, by clinicians and teams with specific training and experience and that there were special arrangements for clinical governance, consent, and audit in place.

NHS England has announced plans to fund open foetal surgery for spina bifida for those who are eligible for the procedure, with the service expected to be operational in the coming weeks.

However, in a second piece of draft guidance, the committee found the internal keyhole repair required further evidence to be collected and should only be used in the context of research.

Both procedures aim to prevent further damage to a baby’s brain, spinal cord and nerves. NICE said that the earlier action could be taken, the better the chances that the symptoms of spina bifida were reduced.

Currently, there is no cure for spina bifida and every week, four women give birth to an affected child.

Usual current practice involves operating on babies within 48 hours of their birth. These new options could be carried out before 26 weeks of pregnancy have passed, said NICE.

Professor Kevin Harris, clinical advisor for the Interventional Procedures Programme at NICE, said: “These innovative procedures have the potential to reduce the symptoms that would otherwise result from spina bifida, improving the quality of life for those with the condition.

“However, these are technically challenging procedures and should only be done in specialised centres, by clinicians and teams with specific training and experience in foetal surgery and who analyse the outcomes to both the foetus and mother.”

Professor Stephen Powis, NHS medical director, said: “The NHS will be offering open spinal surgery for spina bifida for unborn babies to eligible women in just a few weeks.”

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