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 care
Vijay 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-up
The 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 children with chronic disabilities.
Counselling is offered to parents on care issues and needy families are provided with consumables like diapers, air beds and wheelchairs.
Kerala lacks a comprehensive study on the prevalence of major neurodevelopmental disorders and chronic disabilities in children in the State. However, CDC Kerala 16, a survey covering over one lakh children below six years in Thiruvananthapuram in 2014, had identified that 3.08% of the surveyed were positive for developmental issues and multiple disabilities.
A 2025 study in Puthupally, Kottayam, reported an overall prevalence of neurodevelopmental disorders of 1.38% among children under 12 years.
Neurodevelopmental disability
A prospective cohort study from a tertiary Kerala NICU in 2016 found a 6.2% incidence of major neurodevelopmental disability at one-year corrected ageamong preterm babies born at or before 33 weeks.
The rising proportion of preterm and low-birth-weight (< 2.5 kg) [LBW] births in Kerala compounds this picture. State Health department data for 2023-24 puts preterm births at 7.21% and LBW newborns at 14% of live births.
“Roughly, of the 994 babies that survive out of every 1,000 live births in the State annually, between 6-7% go on to develop minor and major disabilities. A significant number of children are being annually added to a cohort that needs continuous care and support,” notes a senior Health official.
Shalabham programme
In 2018, the National Health Mission Kerala launched Shalabham, a comprehensive newborn screening programme for early identification, referral and management of defects at birth, diseases, deficiencies, and developmental delays for all children up to 18 years.
Though around 40 lakh children under two years of age were screened for birth defects, the data are fragmented because 78% of Kerala’s births take place in the private sector and only a tiny fraction of these children might later come into the public health system.
Kerala cannot build a digitised registry of birth defects unless the private sector is formally engaged, with data-sharing agreements, experts feel.
Having a child, whose chronic illness course is unpredictable, leaves serious physical, psychological and financial consequences on the family.
A child with a chronic neurologic or neuromuscular condition typically has multiple comorbidities — intellectual and speech disabilities. They may also face issues of epilepsy, swallowing difficulties, chronic pain, vision or hearing impairment and behavioural and mental health challenges. They require physiotherapy, occupational and speech therapies regularly. They are also highly susceptible to aspiration pneumonia and repeated urinary and gastrointestinal infections, necessitating frequent hospitalisations, say doctors.
Impact on family
“The demands of such debilitating illnesses on an ordinary family are overwhelming. Monthly spending on diapers alone can exceed ₹10,000. There are a large number of cases where the mothers are forced to shoulder the entire care burden with the father abandoning the family. Every hospital visit is a financial drain for them. The neglect and desolation that the ‘normal’ sibling faces is hard,” says Sangeeta Suresh, a palliative expert.
The physical burden intensifies as the child grows. “Once girls attain puberty, maintaining menstrual hygiene becomes a task. A mother told us during a counselling session that she has to wait until her elder child returns from school as she cannot single-handedly change the sanitary pads of her bedridden daughter,” Dr. Hariprasad recollects.
Globally, an estimated 6% of palliative care needs are in children. Yet, palliative care continues to be associated almost exclusively with end-of-life care for adults with terminal diseases. Even paediatricians are yet to fully recognise the palliative care needs of children with chronic conditions. The children could face daily physical issues like pain, breathlessness, spasticity, feeding difficulties, seizures and sleep disruption, which shall be managed alongside psycho-social concerns, Dr. Hariprasad points out.
Systemic gap
The absence of any paediatric-specific community infrastructure for palliative care is a core systemic gap. Children are diagnosed, given a treatment plan and then largely left to families to manage at home, with no structured mechanism for ongoing symptom monitoring, pain assessment or psychological support between hospital admissions, he points out.
“Paediatric palliative care needs to be introduced right from the time of diagnosis to support families from the beginning. The community should step up and share its burden. Money cannot resolve all the problems. Sometimes, reassuring these families that they are not alone is what is needed,” suggests Dr. Sangeeta.
The State Palliative Care Policy assigns responsibility for palliative care to local self-government bodies, which are mandated to implement ward-level services through local medical officers and primary health-care teams. This has not been happening consistently.
Shalabham refers identified children to District Early Intervention Centres (DEIC), which have multidisciplinary teams to offer therapies and follow-up care. But the DEICs are overwhelmed with caseload.
Located in major secondary care hospitals, these are not easily accessible to families with bedridden children.
“The children with developmental disabilities should be continuouslymonitored at specific intervals, given speech, physio, occupational therapies and readied for rehabilitation by the time they turn six years. Our aim should be to reduce the complexities of the disability so that they can be rehabilitated well,” a senior Health official says.
“It is not that the State did not try. At one point, we had the DEICs, then Regional Early Intervention Centres at medical colleges and two mobile intervention units in each district. But the patient load was too much to handle. We need to reinstate this three-tier structure and establish rehabilitation centres alongside the DEICs, to which children can be eased into after they turn six years of age,” he suggests.
(*Names have been changed to protect the privacy of individuals)
