Health and Research
27th February 2026
“As a charity, Shine welcomes any progress in spina bifida research, which could improve the lives of the people we support.
Shine has been aware of the trial, applying stem cells to the spine prior to closure of the spina bifida lesion in utero. The advances in stem cell science that have enabled this first-in-human trial to be possible are remarkable, and we are delighted for the team at UC Davis School of medicine that the safety of the procedure has been demonstrated.
Having seen the difference fetal surgical repair is already making to the lives of children with myelomeningocele and knowing that adding stem-cell therapy to these established surgery techniques might one day improve outcomes for babies born with spina bifida is very encouraging, and very exciting. Improvements in bladder and bowel function will be particularly welcome.
We will be following the next phase of this study very closely to see what it finds”.
Kate Steele, CEO, Shine.
About Shine
Shine is the UK charity supporting anyone affected by spina bifida and / or hydrocephalus, or normal pressure hydrocephalus. Through specialist advice, practical support and trusted information, we help thousands of individuals and families each year to navigate the medical, developmental and social challenges associated with these lifelong conditions.
More information is available at www.shinecharity.org.uk
About the study
There are two main types of spina bifida, open and closed spina bifida.
The babies in the study all had open spina bifida – myelomeningocele. Effects of spina bifida vary from person to person but typically impact muscle strength, mobility, and loss of skin sensation in lower limbs. Bladder and bowels are often affected. Open spina bifida can also change the way the brain develops and there can be an impact on learning and behaviour.
The trial applied stem cells from donated placentas to the exposed spinal cord of the fetus during the fetal surgery.
Established fetal surgery has shown to reduce hindbrain herniation (also known as Chiari II) and rates of shunt surgery. This research indicates that, by adding stem cell therapy, there was no hindbrain herniation and none of the babies in the trial needed shunt surgery post-birth.
The key findings from the study are that this is safe and possible, and as a result the researchers have been able to recruit to a second phase of the study.
The 6 babies who have had this surgery will be monitored until they are 6 years old to observe long term safety, motor function (movement and strength) as well as bladder and bowel function.
Condition stats
Using EUROCAT data from 2021 Shine estimates that there is between 8.1 -11.9 thousand people living in England and Wales with open spina bifida.
Shine estimates that there are 536 pregnancies a year affected by open spina bifida.
The birth rate, however, is much lower, usually due to premature birth or termination of the pregnancy.
Shine’s Pregnancy advice and support service
Shine provides support and information to parents to be when they receive news that their pregnancy has been affected by a Neural Tube Defect such as spina bifida, encephalocele or anencephaly. This includes information on treatment options like fetal surgery.
Shine also offers expert advice on preparing for pregnancy and becoming parents, whether someone has the conditions themselves, or if they have previously had a pregnancy affected by a neural tube defect and want support and guidance to help prepare for future pregnancies.
Shine played a key role in supporting development of the national service specification, and the commissioning of fetal surgery in the UK. We continue to work closely with NHS England and clinical teams to ensure the inclusion of the patient voice and experiences to shape the service.
For further information:
Shine’s Marketing and Communications team
Email: marketing@shinecharity.org.uk
Phone: 01733 555988