AIIMS Delhi Performs India’s First Open Fetal Myelomeningocele Repair at 25 Weeks

The news

A team of over 30 medical professionals at the All India Institute of Medical Sciences (AIIMS) in Delhi performed India’s first open fetal repair of a lumbosacral myelomeningocele, the most severe form of spina bifida, on November 12. The six-hour surgery, carried out at 25 weeks of pregnancy, followed five weeks of planning. Doctors said the defect, which causes the spinal cord and its coverings to push out through a gap in the spine, can lead to paralysis, fluid build-up in the brain and lifelong neurological problems.

The condition begins in the first month of pregnancy when the neural tube fails to close properly. Neurosurgeons usually repair it after birth, but operating earlier aims to stop damage that can occur over months. Dr Deepak Gupta, who led the neurosurgical team, said the procedure is not a cure and the child may still need long-term care. However, he noted that international evidence, including the 2012 Management of Myelomeningocele Study (MOMS), shows prenatal repair can reduce the need for treatment of hydrocephalus and improve early motor outcomes in carefully selected babies. The operation was provided free under the Centre’s Janani Shishu Suraksha Karyakram.

During the five weeks of planning, experts ensured detailed fetal imaging, counselling of the parents, anaesthetic preparation and surgical simulation. The team included professionals from neurosurgery, maternal-fetal medicine, obstetrics, anaesthesia, plastic surgery, radiology and neonatology. Dr Gupta said fetal surgery requires a complete maternal-fetal care programme with rigorous selection, non-directive counselling, ethical oversight, operative protocols, emergency preparedness and lifelong follow-up planning. The mother accepts real surgical and future obstetric risks for a possible benefit to her unborn child, making informed decision-making central.

What is the Janani Shishu Suraksha Karyakram?

The Janani Shishu Suraksha Karyakram (JSSK) is a central government scheme launched in June 2011 to eliminate out-of-pocket expenses for pregnant women and sick newborns accessing public health facilities. It entitles all pregnant women delivering in public institutions to free delivery, including caesarean section, and free drugs, diagnostics, blood, and transport. The scheme also covers sick infants up to one year of age for free treatment, diagnostics, and transport. JSSK was introduced under the National Rural Health Mission, now part of the National Health Mission, to reduce maternal and neonatal mortality by removing financial barriers to institutional care.

What does the MOMS trial show?

The Management of Myelomeningocele Study (MOMS) compared fetal surgery with repair after birth. At 12 months, 40% of children operated on before birth needed a cerebrospinal-fluid shunt, against 82% of those operated on after. Prenatal surgery also improved motor outcomes and reduced hindbrain herniation linked to Chiari II malformation.

What are the risks and limitations?

Open fetal surgery involves opening the mother’s uterus, repairing the fetal defect and closing the uterus. Risks include premature delivery and a uterine scar that can complicate future pregnancies. The procedure is offered only to carefully selected pregnancies at specialised centres. Dr Gupta said the child may still need long-term neurosurgical, urological, orthopaedic and rehabilitation care.

What is the disease burden in India?

Dr Gupta estimated around 1.2 lakh babies a year are born with neural tube defects, including 20,000 to 30,000 with open defects. A 2024 review of 27 Indian studies put the pooled prevalence at 9.46 per 1,000 births and called for stronger national surveillance. Dr Gupta said prevention through periconceptional folic-acid supplementation and food fortification remains essential.

Can other government hospitals perform this surgery?

Dr Gupta said yes, but only through designated tertiary referral centres. Such centres would need maternal-fetal medicine specialists, paediatric neurosurgeons, specialised anaesthesia teams, neonatal intensive care, emergency delivery facilities and long-term rehabilitation. He said AIIMS could set the benchmark through structured training, simulation, ethical oversight and a national referral and follow-up pathway.