New Guidance on Prenatal Repair for Spina Bifida

Peter Russell

September 26, 2019

Babies at risk of spina bifida can be operated on while still in the uterus using a new innovative operation, new guidelines said.

The decision followed a review by the National Institute for Health and Care Excellence (NICE) of two surgical procedures for babies with open neural tube defect.

The first was open prenatal repair, and the second was fetoscopic prenatal repair.

Recommended for NHS Routine Use

An appraisal committee found that although evidence on open prenatal repair showed serious but well recognised safety concerns for the mother and foetus, it was effective enough to be recommended for routine NHS use when carried out in specialised centres by properly trained teams.

Open spinal surgery for spina bifida for unborn babies to eligible women would be offered on the NHS within a few weeks, NICE said.

In a second piece of guidance the committee found that fetoscopic prenatal repair required further evidence to be collected and should only be used in the context of research.

Prof 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."

An appraisal committee said that clinicians who wished to carry out open surgery for open neural tube defects in babies in the womb should:

  • Inform the clinical governance leads in their NHS trusts

  • Give parents clear written information to support shared decision making, including NICE's information for the public

  • Ensure that parents understood the procedure's safety and efficacy, as well as any uncertainties about these

  • Audit and review clinical outcomes of everyone having the procedure

Charity Welcomed Guidance

Gill Yaz, a spokesperson for the spina bifida charity, Shine, said the procedure could help around 20 babies each year. "We welcome this and we're really pleased that we've got this in this country and parents don't have to travel for the surgery," she said.

"Until about 18 months ago people had to get EU funding and travel to other countries like Belgium or Switzerland, and we know families were doing that.

"It's used widely in the US and has proved safe, effective, and beneficial in most cases, and we've been building on that approach and refining it to make it more effective."

NICE's interventional procedures guidance is not mandatory and there is no legal requirement for the NHS to comply with the recommendations. However, it is considered best practice.

Multiple Pregnancies

In further guidance this week, NICE said that monitoring women with multiple pregnancies for foetal complications could lead to better outcomes and help avoid more than a thousand neonatal hospital admissions.

An impact report highlighted results from a project run by the Twins and Multiple Births Association between 2016 and 2019 which found that adherence to NICE guidance on twin and triplet pregnancies reduced neonatal admissions by 65%, and emergency caesareans by 60%.

NICE said that if all maternity units implemented NICE’s recommendations on twin and triplet pregnancies, such as labelling foetuses during scans so they could be differentiated and monitoring them closely for complications, it could lead to 634 fewer emergency caesarean sections, and 1308 fewer neonatal admissions in England each year.

Prof Gillian Leng, deputy chief executive at NICE, said: "Most women having twins or triplets have a healthy pregnancy. However, there is a higher chance of complications for both the mother and babies that means women need to be monitored more closely during pregnancy, labour, and birth."

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