25 years on, Kadalundi recounts memories of rail tragedy

It was a rain-drenched Thursday, and yet there was no let-up in the crowd thronging the corridors of the paediatric outpatient (OP) clinics at Sree Avittom Thirunal (SAT) Hospital, Thiruvananthapuram. Outside one of the clinics sat Vijay*, brooding, scrolling through the picture gallery on his mobile phone.He points to the picture of a young girl, in pigtails, smiling into the camera.“The picture was taken when she was four years old. My little one would hop and skip, hang on to my hand and insist on sitting in front of my bike every time I took her out. Everything changed when she turned five and had to be hospitalised after a seizure,” he says as a lone tear streaks down his cheek.Six-year-old Anusree* is today a ghost of her former self. She is mute, bedridden, on oxygen support at home and is fed through a Ryle’s tube. Last year, she had to be put on ventilator support at the hospital five times. Vijay, her father, who runs a small business, has run up a debt of over ₹50 lakh to treat his only daughter, hoping that someday he can again take her on a bike ride.But her prognosis for cognitive and functional decline due to developmental epileptic encephalopathies with myoclonic seizures is poor.Nilina Jacob*, a Kannur native, has been staying in a rented house in Thiruvananthapuram for two years, alone with her younger daughter aged two years, who suffers from Pompe disease, a rare inherited neuromuscular disorder, and is on continuous oxygen support.She gave up her job, left her eight-year-old son in the care of her family, and came to the city to provide better, more affordable medical care at SAT Hospital. The child requires enzyme replacement therapy, a prohibitively expensive treatment, for survival. She had to be rushed to the paediatric Intensive Care Unit of the hospital several times during the past few months. Yet, Nilina refuses to give up.“It has been financially and emotionally draining. I cannot even sleep at night because I fear that she might stop breathing. My husband is struggling to raise money for the treatment. My son cries over the phone at night because he misses me. The loneliness is terrible at times,” she says, as she breaks into a sob.Lifelong careVijay and Nilina are two representatives of the hundreds of parents who frequent the paediatric palliative clinic at SAT Hospital; people whose lives changed forever when they discovered that their precious child has chronic disabilities requiring lifelong medical care.These parents are exhausted, physically, emotionally and financially. They are caregivers 24×7, sleep-deprived, depressed and for whom a pack of diapers has come to be more valuable than anything else in life.While Kerala takes pride in its low infant mortality rate, one of the lowest in the country, the celebrated Neonatal Intensive Care Unit (NICE) survival rates are now telling the other side of the story — a growing downstream burden of children with neurodevelopmental disabilities, musculoskeletal disorders, congenital deformities and other chronic diseases.Lack of proper follow-upThe rigour of the health system of Kerala in ensuring the survival of every infant has not been matched by investment in ensuring proper follow-up and good developmental outcomes. A child saved in a NICU at 28 or even 24 weeks may go on to live with cerebral palsy, epileptic disorders or genetic conditions for years, while the families bearing that burden remain marginalised and invisible to the system, say medical experts.“Over the years, we managed to bring down infant mortality drastically, but mortality has been replaced by morbidity. The proportion of children with complex, chronic and debilitating conditions has grown exponentially over the decade. Their care requirements are not something families can handle on their own,” observes P. G. Hariprasad, Professor of Paediatrics, SAT Hospital, who runs a speciality OP clinic on Thursdays along with Pallium India, an NGO, which offers palliative care to child