Thursday was drenched in rain, and yet there was no let up in the crowd in the corridors of the pediatric out-patient (OP) clinic at Sree Evitham Thirunal (SAT) Hospital in Thiruvananthapuram. Vijay* was sitting outside a clinic, scrolling through the picture gallery on his mobile phone.
He points to a photo of a young girl wearing pigtails, smiling at the camera.
“The photo was taken when she was four years old. My little girl used to jump up and down, hang onto my hand and insist on sitting on the front of my bike whenever I took her out. Everything changed when she turned five and had to be hospitalized after a seizure,” he says with a lone tear streaming down his cheek.
Six year old Anushree* has today become a ghost of her old self. He is mute, bedridden, on oxygen support at home and is fed through a rhyle tube. Last year, he had to be put on ventilator support in the hospital five times. Vijay, her father, who runs a small business, has taken a loan of over ₹50 lakh for his only daughter’s treatment, hoping that someday he will be able to take her on a bike ride again.
But his prognosis is poor for cognitive and functional decline due to developmental epileptic encephalopathy with myoclonic seizures.
Kannur native Nilina Jacob* has been living in a rented house in Thiruvananthapuram for two years, alone with her two-year-old daughter, who suffers from Pompe disease, a rare hereditary neuromuscular disorder, and is on constant oxygen support.
She quit 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 to survive, which is an extremely expensive treatment. He had to be moved to the hospital’s pediatric intensive care unit several times during the past few months. Still, Nilina refused to give up.
“It has been financially and emotionally exhausting. I can’t even sleep at night because I fear he might stop breathing. My husband is struggling to raise money for treatment. My son cries on the phone at night because he misses me. The loneliness is terrible sometimes,” she says, and she begins to cry.
lifelong care
Vijay and Nilina are two representatives of the hundreds of parents who visit the pediatric palliative clinic at SAT Hospital; People whose lives changed forever when they discovered their precious child had a chronic disability that required lifelong medical care.
These parents are physically, emotionally and financially exhausted. They are 24/7 caregivers, sleep deprived, depressed and for whom a pack of diapers has become 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 famous Neonatal Intensive Care Unit (NICE) survival rates now tell the other side of the story – the increasing burden of children with neurodevelopmental disabilities, musculoskeletal disorders, congenital malformations and other chronic diseases.
Lack of proper follow up
The rigor of Kerala’s health system in ensuring the survival of every infant is not matched by investment in proper follow-up and ensuring good developmental outcomes. Medical experts say a baby placed in a NICU at 28 or 24 weeks may live for years with cerebral palsy, epileptic disorders or genetic conditions, while the families bearing that burden remain marginalized and invisible to the system.
“Over the years, we managed to drastically reduce infant mortality, but mortality has been replaced by morbidity. The proportion of children with complex, chronic and debilitating conditions has increased rapidly in the last decade. Their care needs are not something that families can handle on their own,” says PG Hariprasad, professor of pediatrics at SAT Hospital, who runs a special OP clinic on Thursday with Pallium India, an NGO that provides palliative care to children with chronic disabilities. Is.
Parents are counseled on care issues and consumables such as diapers, air beds and wheelchairs are provided to needy families.
Kerala lacks comprehensive studies on the prevalence of major neurodevelopmental disorders and chronic disabilities among children in the state. However, a survey by CDC Kerala 16, 2014 covering over one lakh children under the age of six in Thiruvananthapuram had identified that 3.08% of those surveyed were positive for developmental issues and multiple disabilities.
A 2025 study in Puthuppally, Kottayam reported an overall prevalence of neurodevelopmental disorders of 1.38% in children under 12 years of age.
neurodevelopmental disability
A prospective cohort study of tertiary Kerala NICUs in 2016 found a 6.2% incidence of major neurodevelopmental disability at one year of corrected age.In premature infants born at or before 33 weeks.
The increasing proportion of premature and low birth weight (less than 2.5 kg) births in Kerala further complicates the picture. State health department data for 2023-24 puts premature births at 7.21% and LBW newborns at 14% of live births.
“Of the 994 live births out of every 1,000 live births in the state annually, between 6-7% develop minor and major disability. A large number of children are being added annually to the group who require constant care and support,” says a senior health official.
Shalabham Program
In 2018, the National Health Mission Kerala launched Shalabham, a comprehensive newborn screening program for early identification, referral and management of birth defects, diseases, deficiencies and developmental delays for all children up to 18 years of age.
Although about 40 lakh children under the age of two were screened for birth defects, the data is fragmented as 78% of Kerala’s births occur in the private sector and only a small proportion of these children may later come into the public health system.
Experts believe that Kerala cannot build a digitized registry of birth defects unless the private sector is formally involved with data-sharing agreements.
Having a child who has an unpredictable long-term illness leaves serious physical, psychological, and financial consequences for the family.
A child with a chronic neurologic or neuromuscular condition usually has multiple comorbidities—including intellectual and speech disabilities. They may also suffer from epilepsy, difficulty swallowing, chronic pain, vision or hearing loss, and behavioral and mental health challenges. He requires regular physiotherapy, occupational and speech therapy. Doctors say they are also susceptible to aspiration pneumonia and frequent urinary and gastrointestinal infections, requiring frequent hospitalization.
impact on family
“The demand of such debilitating diseases on a normal family is very high. The monthly expenditure on diapers alone can exceed ₹10,000. There are many cases where mothers are forced to bear the entire burden of care along with the father abandoning the family. Every hospital visit is a financial ruin for them. The neglect and desolation that a ‘normal’ sibling has to face is daunting,” says palliative specialist Sangeeta Suresh.
As the child grows, the physical burden increases. Dr. Hariprasad recalls, “Once girls attain puberty, maintaining menstrual hygiene becomes a task. One mother told us during a counseling session that she had to wait until her elder child returned from school because she could not change her bed-ridden daughter’s sanitary pads alone.”
Globally, an estimated 6% of palliative care needs are children. Nevertheless, palliative care is almost exclusively associated with end-of-life care for adults suffering from terminal illnesses. Even pediatricians have not yet fully recognized the palliative care needs of children with chronic conditions. Dr. Hariprasad explains that children may face daily physical problems such as pain, breathlessness, cramps, difficulty in eating, seizures and sleep disruption, which must be managed along with psychosocial concerns.
systemic lag
The absence of any pediatric-specific community infrastructure for palliative care is a major systemic gap. He explains that children are diagnosed, given a treatment plan and then largely left to families to manage at home, with no structured mechanisms for symptom monitoring, pain assessment or psychological support between hospital admissions.
Dr. Sangeeta suggests, “Child palliative care needs to start from the time of diagnosis to support families right from the start. The community must come forward and share their burden. Money cannot solve all the problems. Sometimes, reassuring these families that they are not alone is all that is needed.”
The state palliative care policy delegates the responsibility of palliative care to local self-government bodies, who are mandated to implement ward-level services through local medical officers and primary health care teams. This is not happening continuously.
Shalabham refers identified children to District Early Intervention Centers (DEICs), which have multidisciplinary teams to offer treatment and follow-up care. But DEIC is overwhelmed with caseload.
Located in major secondary care hospitals, these are not easily accessible to families with bed-ridden children.
“Children with developmental disabilities must continue toThey are monitored at specific intervals, given speech, physio, occupational therapy and prepared for rehabilitation by the time they turn six years old. Our aim should be to reduce the complications of disability so that they can be well rehabilitated,” says a senior health official.
“It’s not that the state didn’t try. At one time, we had DEICs, then regional early intervention centers in medical colleges and two mobile intervention units in each district. But the patient load was too much to handle. We need to restore this three-tier structure and set up rehabilitation centers with DEICs, which can easily accommodate children after the age of six,” he suggests.
(*Names have been changed to protect the privacy of individuals)
