Bridging Science and Support: Patient Outreach Program and Spina Bifida CME
On March 21st and 22nd, 2026, KEM Hospital, Pune, became a hub for holistic care and academic exchange for patients with spina bifida. Pediatric Nephrology Service, Renal Unit in association with The Spina Bifida Association India, hosted a two-day initiative. The events successfully integrated a high-level Multispeciality Continuing Medical Education (CME) session for healthcare professionals with a deeply impactful Patient Outreach Program titled
“A Life with Dignity, Beyond Spina Bifida.”
DAY 1:
THE OUTREACH PROGRAM ON 21 MARCH 2026
The weekend began with a focus on our patients and their families. Recognizing that Spina Bifida is a complex condition requiring a 360-degree approach, the program brought together a diverse panel of experts to provide a “one-stop” guidance session. The program was attended by children with spina bifida and their dedicated parents and caretakers. We were particularly honored to welcome students and staff from a Divyang Kalyankari Shikshan Sanstha, a special school for differently abled children in Wanowrie, who joined patients attending the Pediatric Nephrology OPD. Dr Santosh Karmarkar, senior pediatric surgeon from Lilavati Hospital and founder trustee of Spina bifida Foundation, encouraged the children and caregivers to talk about their own experiences: problems and successes. He made a presentation of images, illustrating the journey and successes of patients with spina bifida across India. Thereafter, each patient was evaluated by Dr Sanika Rapole (pediatric orthopedic surgeon), who addressed mobility and bracing; Dr Santosh Karmarkar, discussed surgical interventions; and our Pediatric Nephrology team emphasized the “silent” but critical importance of bladder and kidney health.
The presence of the occupational therapist from the residential School for the Differently Abled allowed for a vital exchange of ideas between hospital-based medical care and school-based functional therapy. The success of this outreach program was significantly bolstered by the tireless efforts of our OPD volunteer, Ms Carol Coelho who was instrumental in reaching out to our patients and ensuring that they reached the venue.
THE OUTREACH PROGRAM ON 21 MARCH 2026
The weekend began with a focus on our patients and their families. Recognizing that Spina Bifida is a complex condition requiring a 360-degree approach, the program brought together a diverse panel of experts to provide a “one-stop” guidance session. The program was attended by children with spina bifida and their dedicated parents and caretakers. We were particularly honored to welcome students and staff from a Divyang Kalyankari Shikshan Sanstha, a special school for differently abled children in Wanowrie, who joined patients attending the Pediatric Nephrology OPD. Dr Santosh Karmarkar, senior pediatric surgeon from Lilavati Hospital and founder trustee of Spina bifida Foundation, encouraged the children and caregivers to talk about their own experiences: problems and successes. He made a presentation of images, illustrating the journey and successes of patients with spina bifida across India. Thereafter, each patient was evaluated by Dr Sanika Rapole (pediatric orthopedic surgeon), who addressed mobility and bracing; Dr Santosh Karmarkar, discussed surgical interventions; and our Pediatric Nephrology team emphasized the “silent” but critical importance of bladder and kidney health.
The presence of the occupational therapist from the residential School for the Differently Abled allowed for a vital exchange of ideas between hospital-based medical care and school-based functional therapy. The success of this outreach program was significantly bolstered by the tireless efforts of our OPD volunteer, Ms Carol Coelho who was instrumental in reaching out to our patients and ensuring that they reached the venue.
THE CME – A LIFE WITH DIGNITY, BEYOND SPINA BIFIDA ON 22ND MARCH 2026
The CME brought together residents and consultants from KEM Hospital, Pune and other institutes across Pune to discuss the latest protocols in management of patients with neural tube defects. The sessions included fascinating prospects of antenatal surgical management, post-natal neurosurgical interventions, orthopedic management and prevention of neural tube defects. A specialized focus on early neurogenic bladder management by Dr. Jyoti Sharma and Dr Shashank Shrotriya, highlighted the prevention of chronic kidney disease (CKD) in these children. In a unique shift from traditional medical talks, the program featured “Lived Experience Experts.” Their stories of resilience—including a standout stand up comedy set by Ms. Sweta Mantri—reminded everyone that dignity and joy are just as important as clinical outcomes. The program was smoothly anchored by Dr Jyoti Singhal. It concluded with a panel discussion titled “Facing the Invisible Challenges,” moderated by Dr Nivedita Pande, consultant Pediatric Nephrologist at KEMH, Pune with discussion around physiotherapy, integration into the mainstream, importance of family support and that of educational institutions, amongst other challenges faced by lived experience experts and their parents.
The success of this two-day event underscores KEM Hospital’s commitment to “Quality and Ethics in Patient Care.” By bringing together surgeons, physicians, social workers, and—most importantly—the patients themselves, we have reinforced a care model where no challenge is faced alone.
This 2-day program was conducted as a part of our center’s activities for World Kidney Day (observed globally on March 12, 2026). By focusing on the specialized needs of spina bifida patients, we aim to uphold the WKD mission of “Kidney Health for All”—ensuring that every child, regardless of their medical complexity, has access to the preventive care needed to protect their renal health for a lifetime.
