The fetal surgery program for open spina bifida is now commissioned by NHS England through two Fetal Surgery Centres (FSCs):
- The University Hospitals Leuven, in Leuven, Belgium
- University College London Hospitals NHS Foundation Trust (UCLH) with Great Ormond Street Hospital for Children NHS Foundation Trust (GOSH), London, UK.
These hospital units provide:
- Initial telephone or teleconference assessment to discuss provisional eligibility of women and answer questions from caregivers or the woman herself.
- Face to face assessment in the unit allocated according to the patient’s geography. Details on the allocation are available in the Frequently Asked Questions (FAQs) for Referrers on this website. This assessment includes:
- Detailed assessment by ultrasound and/or MRI
- Personalised counselling regarding the baby’s condition and prognosis based on the type of lesion, level of the lesion, level of Chiari II malformation and existing lower limb movement
- Discussion of all management options including fetal surgery
- Final eligibility is based on inclusion and exclusion criteria (detailed in the Frequently Asked Questions (FAQs) and will also be informed by findings on :
- Micro-array (detailed examination of the chromosomes and genes of the baby)
Only after eligibility is established at the fetal surgery centre will a prenatal operation be offered. Please refer a patient to the service as soon as a diagnosis of fetal spina bifida is made and while awaiting the results of genetic tests. If the patient chooses to proceed with surgery, necessary arrangements for surgery will be made and communicated with her local team.
Spina bifida (myelomeningocele, MMC) is a condition that arises before birth where the spinal column and spinal cord are not properly formed. Traditionally the defect is closed using surgery shortly after the baby is born. Recent studies have shown that the defect can now be closed by operating on the baby before birth (fetal surgery).
Evidence shows that in selected cases open fetal surgery to close the spina bifida defect improves baby outcomes compared to surgery after birth. There are only a few centres in the US, South America and Europe where this type of fetal surgery is performed. Open fetal surgery involves making a small opening in the uterus (hysterotomy) in mid-pregnancy to access the fetus and close the spina bifida defect. Fetal surgeons then close the uterus allowing the baby to continue to grow for the rest of the pregnancy. Our multidisciplinary team at UCLH has secured the clinical permissions to offer the first open fetal surgery service of this kind in the UK.
If you are a clinician and would like to refer a patient for consideration of open fetal surgery for spina bifida, please download the “Fetal surgery referral pro-forma” and the “Frequently asked questions for referrers”. There are further useful documents at the bottom of the page.
Please refer a patient to the service as soon as a diagnosis of fetal spina bifida is made and while awaiting the results of genetic tests.
For queries or more information about any service please contact: fetal.
To refer patients for any service please contact: UCLH.
Professor Donald Peebles is the Clinical Director for the UCLH Division of Women’s Health (2015 - present) and is a consultant in obstetrics and fetal medicine. He provides a range of diagnostic and therapeutic services on the Fetal Medicine Unit (FMU) with particular interests in the management of fetal growth restriction, fetal rhesus disease and disorders of fetal brain development.
Donald has a number of research interests that focus on improving the outcomes for women and their babies following complicated pregnancies. He is the president of the Blair Bell Research Society, the showcase for British research in obstetrics and gynaecology as well as a member of the Academic Committee of the Royal College of Obstetricians and Gynaecologists. In 2013 he was appointed as co-clinical lead for the NHS England London Maternity Strategic Clinical Network.
Donald is a faculty member of the Infection, Inflammation and Immunity Theme of the NIHR UCLH Biomedical Research Centre.
Professor David offers a range of diagnostic and therapeutic services in the Fetal Medicine Unit (FMU). She specialises in cases where the baby has a structural anomaly, a genetic condition or when the baby’s growth is poor (fetal growth restriction).
She has close links with the talented UCLH neonatal team that are expert in caring for the smallest preterm infants. Professor David set up the Preterm Birth Clinic at UCLH which is now one of the busiest in the UK, providing continuity of care in a nurturing environment. The comprehensive service offers pre-conceptual counselling, a wide range of cerclage and other treatments and predictive tests.
Jan Deprest is a leading international fetal surgeon who works two days a week at UCLH as a Consultant and at UCL as a Professor of Obstetrics and Gynaecology. At UCL he works in the Institute for Women's Health and the Translational Imaging Group. His home institution is at the Katholieke Universiteit Leuven and its University Hospitals Leuven (Belgium). Prof Deprest is currently the academic chair of the Department of Development and Regeneration and director of the Centre for Surgical Technologies.
Mr Attilakos is the lead clinician for the Maternal Fetal Assessment Unit (MFAU). In addition to looking after single pregnancies, Mr Attilakos specialises in looking after complicated and uncomplicated multiple pregnancies.
He has a special interest in Postgraduate Medical Education and is the RCOG College Tutor for UCLH. He has co-developed a national course for teaching operative birth skills to junior obstetricians.
Raf Napolitano was appointed as a fetal medicine consultant in obstetrics and fetal medicine at UCLH in 2017. He is the lead clinician for the ultrasound screening unit and one of the developers of the training programme in obstetric ultrasound and fetal medicine. He is an expert in neurosonography.
Mr Pandya is a consultant in fetal medicine and has been an honorary senior lecturer at UCLH since 2000. He is currently the director and clinical lead of fetal medicine services at UCLH.
Mr Pandya is dedicated to caring for pregnant women and in particular the well-being of their baby. His expertise is in the ultrasound examination of the mother and unborn baby(s) with particular interest in first trimester anomalies, fetal cardiology, surgical anomalies, renal anomalies and fetal therapy. He has done extensive research into screening for fetal aneuploidy and fetal medicine.
Mr Wimalasundera is the Clinical Lead for Obstetrics at UCLH and considered one of UKs leading specialists in the management of multiple pregnancies. He manages both low and high risk pregnancies and specialises in the management of multiple pregnancies including complicated monochorionic pregnancies and runs the multiple pregnancy service.
He encourages the natural management of pregnancies but also offers the option of a natural caesarean Section when it is appropriate.