A hand of care for children on the road to recovery

For children with complex airway and swallowing conditions, surviving a critical surgery is often only the first hurdle. The struggle continues even after they are discharged from the hospital.Picture a one-year-old who comes home with a tube to help them breathe or feed. The child may need continued medical supervision, specialised feeding support and help managing the tube. Parents and caregivers may not always have the necessary skills or knowledge to manage these needs.To address this gap, the Children’s Airway and Swallowing Centre (CASC) will launch its ‘Last Mile Care’ initiative on Children’s Day, extending support beyond the hospital through services that reach the little ones and their caregivers at home.The services would include a dedicated helpline for emergencies and facilitation for video consultations, easily accessible ambulance services equipped with essential intensive care equipment and trained personnel, and a self-care video accessible through a QR code to help deal with tube care and prevent airway obstruction.While the services would be primarily available in Bengaluru and other parts of Karnataka, the Centre would extend these services to other parts of the country where experienced doctors were available, said E.V. Raman, founder of CASC and senior ENT specialist.Falling off the radar Dr. Raman traces the beginnings of CASC to 26 years ago, when conversations with a paediatric interventionist made him realise that several children discharged after critical surgeries face life-threatening complications at home.“A feeding tube could slip out, or something else could go wrong, and there would be nobody to help them. Human life is precious, yet these children were effectively falling off the healthcare radar,” he said.But in most cases, families would have already exhausted their financial resources on the surgery and intensive care and would not be able to afford further treatment. The lack of coordinated care across multiple specialities was another missing factor.Dr. Raman set out to raise money from donors, which was eventually parked with the Manipal Foundation to be used exclusively for CASC. The centre took shape in 2000.Having raised around ₹4.5 crore so far, CASC has treated more than 2,500 children until now, including those from different parts of India and countries such as Bangladesh, Pakistan, Ethiopia and Sri Lanka.“Here, families do not have to run from one doctor to another. Cardiologists, pulmonologists, gastroenterologists and other specialists come together to assess and treat the child under one roof,” Dr. Raman said. Nearly 90% of the patients have been treated free of cost. According to Dr. Raman, the cost of treatment could vary between ₹50,000 and ₹22 lakh depending on complexity. The centre, situated inside Manipal Hospital, Old Airport Road, receives substantial concessions from the hospital, which waives bed, operation theatre and intensive care charges.Last mile careAccording to Dr. Raman, the Last Mile Care initiative was a result of realising that the care children receive in the hospital was only one part of the treatment.“There is a great deal that needs to be done outside the hospital as well,” he said, citing two incidents.The team performed surgery on a six-month-old baby from a small town in northern Karnataka, who suffered from a narrowed airway below the voice box. The surgery to enlarge the airway was successful, and the child was sent home, with instructions given to caregivers. Unfortunately, one day, the tracheostomy tube broke, slipped into the windpipe and blocked both lungs. Although an extremely rare instance, the parents panicked on seeing the child choking. By the time the local doctor found the cause to be the broken tube, it was too late.“A similar incident occurred on Republic Day last year, but this time we were able to intervene in time,” the doctor recollected.“We received a call about a child facing a similar problem. We found that the family was around 80 km from Mysuru and asked them to rush to a hospital there. One of our former students, who was working at a large corporate hospital in Mysuru, was contacted and asked to receive the child in the emergency department,” he said.The team guided the doctor through a video call, and the child was saved.Dr. Raman said their experiences with patients made them examine what more could be done to support children beyond the hospital. “Last-mile care involves several aspects beyond the actual surgery, including transporting children safely to the centre, coordinating with the doctors who previously treated them, training parents, and maintaining contact with families after they return home.”While the instructional video for the caregivers is currently available only in English, the team plans to translate it into regional languages, including Kannada. A round-the-clock, toll-free helpline and well-equipped ambulances with trained personnel will also be launched under the initiative.“Together, these measures are intended to ensure that children receive support not just during their hospital stay but throughout their treatment journey,” Dr. Raman said.