Prenatal surgery

Prenatal surgery, to close or cover a spina bifida lesion before birth, can sometimes be carried out in certain circumstances. There are significant risks for both mother and fetus, the benefits are variable and impossible to predict, and the long-term effects are unknown at the present time.

You can also watch this video, courtesy of Gift-Surg for more information.

There are two types of prenatal surgery:

Open fetal surgery

In 2019, NHS England commissioned a service to carry out open fetal surgery (that is, surgery in the womb) for babies diagnosed with spina bifida.

The service specification can be accessed by clicking here. 

The centres that were selected are –

University College London Hospitals NHS Foundation Trust (UCLH) / Great Ormond Street Hospital for Children NHS Foundation Trust (GOSH) in London

For people living in London, South East and South West England, the East of England, Wessex, the following parts of the Midlands (Leicester, Wolverhampton, Shrewsbury & Telford, North Midlands and Coventry & Warwick) and South Wales.

University Hospitals Leuven, in Belgium

For people living in the North East and North West England, Yorkshire and the Humber, the following parts of the Midlands (Nottingham, Derby & Burton, Birmingham), Mid and North Wales, Northern Ireland and Scotland.

The two centres work closely together as a virtual single unit, and some of the same clinicians work at both centres.

Click here for details of the service which is hosted on the UCLH website.

If your baby has had a diagnosis of spina bifida at the midterm (20 week) scan, and you would like to know more about open fetal surgery, email:

spinabifida-fetalsurgery@nhs.net

Or call the unit at University College London Hospital on 020 3447 9144. 

The service the NHS has commissioned is for the ‘open’ type of surgery. The ‘open’ approach has been commissioned as the current evidence indicates that, compared with other approaches, this has the best outcomes for the baby.  ‘Open’ fetal surgery involves making an opening in the mother’s abdomen and womb to operate on the baby’s back and close the lesion.

This surgery is carried out before the 26th week of pregnancy, as the earlier in pregnancy the surgery happens the better the fetal outcome. It is important to know that there are several criteria for surgery, and the surgery will not be right for everyone. If the clinical team decide that surgery is an option there are several checks that will be made to make sure the surgery is safe for you and your baby, and to ensure that your baby is likely to benefit from the surgery.

If your baby has had a diagnosis of spina bifida at the mid-term (20 week) scan, and you would like to know more about open fetal surgery, talk to your Fetal Medicine Consultant about whether the surgery might be an option for you.

Click here for information on open fetal surgery on the National Institute of Clinical Evidence (NICE) website.

Fetoscopic surgery

Fetoscopic surgery for spina bifida involves a ‘keyhole’ approach, operating on the baby’s back through small holes made in the mother’s abdominal wall.

Experimental trials into different approaches to fetoscopic surgery are being undertaken in different parts of the world. As yet, there is not yet enough evidence to fully understand the benefits and risks to the fetus/baby and the mother compared to open fetal surgery.

Therefore, fetoscopic surgery is not currently available on the NHS

NHS England commissioners plan to wait for clearer clinical evidence as to which of the various methods of fetoscopic surgery has the best outcomes before considering commissioning this as an NHS service. .

Click here for information on Fetoscopic Surgery on the National Institute of Clinical Evidence (NICE) website.

Fetoscopic surgery for spina bifida in the UK – King’s College Hospital, London

Shine is aware that King’s College Hospital in London is currently undertaking fetoscopic surgery on an experimental basis. At the moment, the surgery is being performed later than 26 weeks of pregnancy. There is no fee to patients for this service.

If your baby has had a diagnosis of spina bifida at the midterm (20 week) scan, and you would like to know more about fetoscopic surgery, email kch-tr.HBUreferrals1@nhs.net or martasantorumperez@nhs.net or call the unit at King’s College Hospital on 02032 99825

(NB: This service is not offered by the NHS).

Support from Shine

If you have any questions about spina bifida, and what services Shine can offer, contact us on 01733 555988 or firstcontact@shinecharity.org.uk

Disclaimer: Shine is unable to provide clinical advice on either of the above procedures, the eligibility criteria for the surgery nor the possible outcomes or risks. This is something that Fetal Medical Consultants working within the above services will advise on. It is important that you have fully discussed the benefits and risks, and any areas of concern with the Fetal Medicine Consultant.

 

Please watch this video from Gift-Surg for more information: 

Need more help?

If you need to speak with one of Shine’s specialist advisers about spina bifida or hydrocephalus, call us on 01733 555988 or click here to email us.

Our office hours are Monday to Friday, 9am to 5pm. We aim to respond to all enquiries as quickly as possible!

 
Donate Become a member