Author: Dr Suhana Sulfiker, Senior resident, Palliative Medicine, AIIMS New Delhi.
The boy knows the rhythm of the rails by heart. From the narrow lanes of his small hometown to the vast platforms of New Delhi, the 1600-kilometre journey has become a familiar passage, not of adventure, but of necessity. His parents carry medicines instead of souvenirs and hope instead of rest.
He got diagnosed with cystic fibrosis, a disease that doesn’t show on the outside but quietly reshapes childhood, after repeated hospital admissions at just one year of age, when every cough seemed to linger and every infection took longer to heal. What began as routine visits soon turned into an endless cycle of tests, treatments, and careful routines. Since then, his life has been measured in hospital corridors, airway clearance sessions, and the soft hum of nebulisers that fill his evenings.
His days are punctuated by coughing fits, breathing treatments, and enzyme capsules that accompany every meal. School attendance is irregular, and lessons often arrive through notes sent by friends. On better days, he watches cricket matches from the sidelines, his lungs not quite keeping up with his heart’s enthusiasm. Some classmates keep a cautious distance; afraid his cough might be contagious. His mother has learned to read the smallest change in his breathing; she knows that a simple cold could mean another hospital stay, another journey, another night without sleep.
Cystic fibrosis (CF) is a chronic, inherited multisystem disorder caused by mutations in the CFTR gene. This defect makes mucus thick and sticky, leading to lung infections, digestive problems, and nutritional deficiencies. Over time, it affects every system in the body. Despite advances such as CFTR modulators, a class of precision drugs that correct the underlying protein defect, access remains limited in many parts of the world, including India. Children continue to live with symptoms that affect not just the lungs but their overall quality of life.
While medicine has advanced dramatically, CF reminds us that longevity alone is not enough, living well matters too. That’s where palliative care enters the story.
Palliative care is often misunderstood as end-of-life care. In truth, it begins at diagnosis and continues alongside disease-directed treatment. It aims to relieve symptoms, support families emotionally, and address the social and spiritual challenges of living with chronic illness. In cystic fibrosis, where fatigue, breathlessness, pain, anxiety, and sleep disturbance are constant companions, palliative care acts as the steadying hand that helps children and parents cope with uncertainty.
Globally, the field has begun to recognise this. The Cystic Fibrosis Foundation in the United States now recommends that palliative care be integrated into routine CF management, not as a last resort but as an essential layer of support. When palliative care teams work alongside CF clinicians, patients experience better symptom control, fewer hospital admissions, and greater emotional well-being.
For children, the benefits go beyond medicine: improved school attendance, confidence in social interactions, and relief from the silent burden of chronic illness. For families, it provides guidance through complex decisions, prognosis, hospitalisation, or comfort-focused care at home.
In India, however, paediatric palliative care is still an emerging field. Services are concentrated in tertiary cancer hospitals, and children with non-oncological diseases like CF often fall through the cracks. Families travel long distances, as the boy from West Bengal does, to access specialised care. Awareness among clinicians is improving, but infrastructure, trained workforce, and community support remain limited.
As part of the Children’s Palliative Care Leadership Program, at the Department of Palliative Medicine, AIIMS New Delhi, efforts are underway to integrate palliative care into the routine management of children with cystic fibrosis in India. This approach encourages paediatric teams to adopt a more holistic view of care, supporting physical comfort, emotional wellbeing, family resilience, and overall quality of life. It also means recognising children not merely as patients but as growing individuals with dreams, frustrations, and voices that deserve to be heard.
One boy’s journey speaks to something larger than one child’s struggle, the need for systems that see beyond disease, that bridge the distance between hospital and home, between survival and living well. Until then, families like his will keep travelling, carrying medicines, and hope, across sixteen hundred kilometres.
This narrative draws from clinical experiences and reflections within a tertiary care setting, where children with cystic fibrosis continue to inspire conversations around holistic and compassionate care.
Leave a Reply