The lack of neonatal facilities at the peripheral health centres and hospitals across Jammu and Kashmir coupled with the lack of awareness among people aggravates the problems associated with Cerebral Palsy which can be extremely taxing for a new-born as well as parents.
By Nazir Ganaie
With no proper neonatal facilities at the peripheral healthcare institutions across Jammu and Kashmir, thousands of parents whose children are born with Cerebral Palsy have to face hard times. “You end up slipping into distress once you have such a case in your family,” said Muhammad Haseeb, a parent. “There is a constant worry on your mind that your child has a disability and wherever you go, you have to be extra cautious in dealing with your child.”
Cerebral Palsy (CP) is one of the most common congenital (existing at or before birth) disorders. There are three major CP types among children; Spastic Cerebral Palsy, Athetoid Cerebral Palsy which leads to involuntary and uncontrolled movements, and Ataxic Cerebral Palsy which causes problems with balance and depth perception.
“CP is the permanent disability of central nervous system which results in mental retardation and motor disorder that appear in first two years of life. It does not get worse over time. But the State should be able to provide standardised facilities, both at tertiary care and peripheral hospitals,” says Dr Suhail Naik, senior resident, Paediatrics, GB Panth Hospital.
The disease affects muscle control and coordination and even simple movements like standing still become difficult for patients. Other functions that also involve motor skills and muscles such as breathing, bladder and bowel control, eating and talking also may be affected if a child has CP.
According to Dr Naik, most common causes of CP in Kashmir is perinatal asphyxia (birth asphyxia), neonatal sepsis, neonatal hypoglycemia and neonatal hyperbilirubinemia. “Delayed recognition of these conditions because of poor peripheral healthcare system across Kashmir, improper transportation of fragile kids from peripheral to central hospital, frequent central nervous system infections because of incomplete vaccination give rise to such cases,” Dr Naik said.
However he says that CP is partly preventable through proper antenatal care, safe, deliveries in hospitals, immunisation of mother and child, proper neo-natal care, proper transport of newborn to central hospitals in critical care ambulances with accompanying trained staff, detailed immunization to infants including pneumococcal and Hemophilus B influenza vaccination.
The exact cause of CP hasn’t always been known; however many cases happen due to problems during pregnancy when the foetus’ brain is either damaged or doesn’t develop normally. This can be due to infections, maternal health problems, genetic disorder or something that interferes with normal brain development. Rarely, problems during labour and delivery can cause CP.
“Premature babies — particularly those who weigh less than 3.3 pounds (1,510 grams) — have a higher chance of having CP than babies that are carried to term. So do other low-birth-weight babies and multiple births, such as twins and triplets,” Dr Naik says. Brain damage in infancy or early childhood also can lead to CP. For example, a baby or toddler might suffer damage because of lead poisoning, bacterial meningitis, poor blood flow to the brain, being shaken as an infant (shaken baby syndrome) or being in a car accident.
Dr Naik blames the government for failing to streamline the neonatal facilities at peripheries across the State. He says there is a dire need of creating Paediatric hospitals in north, south and central Kashmir which would boost to addressing various diseases in time. Regarding CP and other neurological disorders among children, Dr Naik says it is ironic that there isn’t any comprehensive research done on the subject so far.
“It is a hard reality; we see less doctors but more paramedics treating pregnant women in periphery hospitals, which shoots up the cases of disorders. Besides, there is a lack of awareness among women to carry themselves during pregnancy,” he said.
Cerebral palsy is the most common physical disability in childhood. CP occurs at a rate of 2-2.5 per 1000 live births in developed countries, researches show. Researchers say that in India, there is a dearth of epidemiological data on neurological illnesses among children and adolescents. Various community-based studies from India have documented an overall prevalence of major neurological disorders in the recent past. The average crude prevalence for active epilepsy has been estimated to be 533 per 100,000 and that of febrile seizures between 328 and 571 per 100,000. Community studies from eastern, northern and southern parts of India have documented overall crude prevalence of cerebral palsy to range between 21 to 173 per 100,000 and that of its disorders to be around two per 100,000.
However, no comprehensive analysis of neurological disorders commonly prevalent among children and adolescents has been carried out in India, says Dr Tapas K. Banerjee at National Neurosciences Centre.
“Although some of these disorders may produce significant morbidity and mortality and require rehabilitation. Some of these disorders, such as epilepsy, may impose a huge economic burden. The annual economic burden of antiepileptic drug treatments as monotherapy is estimated to be 4-30 per cent of GNP per capita whereas corresponding figure from a western country is 0.2-1.5 per cent 7,8 On a global perspective, neurological and psychiatric disorders combined account for a remarkable 28 per cent of all years of life lived with a disability,” he says.
President of Doctors Association Kashmir, Dr Nissar-Ul-Hassan says CP is a permanent damage to child’s brain- before birth, during birth or immediately after birth that cannot currently be fixed.
“The prevalence rate of this incurable but preventable disorder in Kashmir is 277 per 100, 000,” he says. “It is lack of maternal and child care in peripheries that is responsible for growing number of cases in Kashmir,” he said. He says a majority of deliveries in peripheries are conducted in unhygienic conditions by untrained and unqualified persons which could be a reason for injury to growing brains.
“Infections like rubella and toxoplasmosis during pregnancy which could be prevented by mere awareness are responsible for majority of these disabilities,” he says.
Medical Superintendent of GB Panth Hospital, Dr Shafaqat Khan says there is a greater need to create wider awareness among masses regarding such disorders. “Prevention is better than cure,” he says, “Kashmir’s lone paediatric tertiary care has now acquired super-specialty in various departments.”
Dr Khan says the hospital has developed various departments using high end machinery and up gradation of equipment. He says that in Department of Pedia-Ophthalmology, the congenital disorders including ‘blocked tear duct’ can now be diagnosed and treated there. “We have installed two more machines in Nephrology department and started using dialysis treatment here,” says Dr Khan.
“Though the treatment for cerebral palsy is not totally curative, the palliative treatment provided to these children on continuous basis can make them lead a near normal life. Many children with this condition (CP) can lead a normal life. People should also understand that all the children with this condition are not mentally retarded,” says Dr Khan.
Ironically there are very minuscule social sector interventions into such disorders. A Srinagar based Voluntary Medicare Society runs various programs under Shafaqat Special School and Shafaqat Rehabilitation Centre, where children with CP are enrolled for treatment.
“The lack of disabilities care in Kashmir sparked our desire to start such projects,” Dr Bashir Ahmad, physiotherapist and administrator at Voluntary Medicare Society, told Kashmir Scan. VMS deals with treating children with cerebral palsy, muscular dystrophy, spina bifida (a birth defect that affects spinal bones), mental retardation, and other medical illnesses. “We provide medical equipment and devices like cerebral palsy chairs, water bags, and orthotics devices,” he said.
Working for such children was not easy. The main challenge was the lack of awareness among parents in rural areas about neuro-degenerative diseases, “Our doctors at the hospitals mislead the parents, which results in deformation of the children and addition to the problem,” he said, adding: “Spreading awareness about these diseases is a major act in eliminating such diseases in future.”.
In Western countries, the governments spend a considerable amount of budget towards maintaining the dignity of people with disabilities. But the non-western countries like ours are yet to learn to confer them some social stature, “The mantra of the service is life with dignity; they provide for living, enjoyment, social integration and nearly anything you can think of. They are provided with professional careers, housing and social security,” said Tawseef Lone, a Kashmiri who has several years of experience of working in disability services in Australia.
“Now compare that to attitude of government in Kashmir; we have nothing. Most of the disabled people are either being cared for by the families or roaming on roads. There are no respite centres, communities or welfare system for disabled people. Disability is not only congenital; one can acquire it from stroke, accident, etc. Kashmir does not have specialist nurses, care workers, counsellors or psychiatrists who can cater to the daily demands of a disabled person,” he said.
Lone suggests that Kashmir needs respite centres and trained professionals to run them with funding from the government and a set budget to provide for social integration and dignity of the disabled people, “Because they are part of our society and have every right to living a dignified life as abled people,” he says.