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)
- MRI
- Ultrasound
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.
Fetal surgery for Spina bifida
General enquiries
Referral
Other referral information
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.
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.
