We share our reflection on the journey of a child with a severe neurological illness, highlighting the transformative role palliative care has, not just in symptom relief, but also in restoring dignity and comfort while offering emotional support to the child and her family.
Our diverse team of passionate, resource-strapped yet enterprising healthcare professionals had the privilege of walking alongside this family during a protracted period of medical complexity and helplessness. The story echoes the silent strength and resilience of the child, her caregivers, and the care team that stood by her through this turbulent road to recovery.
A 14-year-old adolescent girl was referred to our team for pain and symptom management due to severe neurological manifestations of tuberculosis-associated immune reconstitution inflammatory syndrome (TB-IRIS). Central nervous system involvement had rendered her non-verbal, with severe spasticity (Modified Ashworth Score: 3/4 in all limbs), profound dystonia (BADS Score: 24/32), and severe pain (Revised-FLACC Score: 9/10). She was in near-constant distress, with poor sleep and limbs locked in abnormal, stiffened postures. Her back was often arched in painful contortions.
Her caregivers—her mother and 15-year-old sister—were visibly overwhelmed. Her constant moaning and wailing echoed through the paediatric ward, distressed not only her family but also other patients, nurses, and doctors. She seemed to have been stripped of everything human about her—her voice, agency, and her right to be free of suffering.
Together, the primary paediatric and our palliative care teams crafted a multifaceted management plan to address her primary symptoms of pain, dystonia, spasticity, poor sleep and nutrition, and rehabilitation. Slowly and gradually, over the next two months, she began to return to herself.
Collaboration was key for the implementation of the care plan. The neuropalliative care team at NIMHANS, led by Dr. Priya Thomas, Mr. Kailash (social worker), Mr. Sridharan (occupational therapist), and Nurse Angela, provided expert guidance and a continuum of care. The team played a crucial role in addressing the psychosocial issues faced by the family—such as poor decision-making capacity, limited knowledge about the illness, and challenges in maintaining hygiene and regular exercise routines. The family was educated on the importance of hygiene and guided in establishing a regular exercise regimen. Assistive devices for muscle support were suggested, which greatly enhanced the girl’s comfort and mobility.
Supportive counselling sessions were provided to help the family process their distress and develop effective coping strategies. The caregiver burden was acknowledged and actively addressed. Efforts were made to sensitize with local resources to ensure ongoing support beyond the hospital setting.
Mobility India, an NGO focused on supporting individuals with disabilities, especially children and women, generously donated assistive devices, including upper and lower limb splints that significantly aided her recovery. The department staff, moved by her journey, stepped in to provide clothes and small gifts for her and her family.
For me, this case stirred something deeply personal. Neither I nor my young team of paediatric anaesthesia fellows, residents, and staff had previously managed a child with such complex, chronic pain. Having completed intensive paediatric palliative care fellowship training with TWCC (Two Worlds Cancer Collaboration), I felt confident that we could help. Even with all the knowledge, still, there were times it was overwhelming and uncertain—dealing with the side effects of drugs, silent desperation in the mother’s eyes, or the realization of the loss of her siblings’ childhoods.
When the quiet victories arrived, we celebrated. Undisturbed night sleep. A gradual gain in weight. Limbs at rest. No more crying. The child who was lost in intense suffering had found her way back to our world, little by little.
This healing didn’t happen overnight, and the journey was anything but linear. We learned to persist. We learned to think creatively, to reach out for help beyond our walls, and above all, to comfort, not just focus on the cure. To be present. To witness. To care.
This girl of fourteen taught us that in medicine, “doing something” doesn’t always mean curing. Sometimes, it means bringing silence to where there was once torment. Sleep where there was suffering. And presence, even when words are absent.
It has deepened our commitment to early integration of palliative care in paediatric neurology and strengthened our belief in the power of collaboration, advocacy, and compassionate listening.
