Over the past five years Hoovinahadagali has seen a twenty four percent rise in mentally retarded patients . Family members of patients are expecting better infrastructure and medical facilities.
By Shrabona Ghosh
Rajeshwari, a short stature woman with a lean figure slouched her way out of a dimly light room. She came out after being summoned by her 65-year-old husband Vishwanath. Caressing an old photo frame she looked with teary eyes, deep enough, to give an insight into her obscure story.Spreading out the mat she made a place to sit. Wiping her tears she looked at the frame and said “This is Nilkanth my 17-year-old son who died last year. He was mentally retarded and was fighting his ailment from the time he was three years old. He was diagnosed with mental retardation at the age of three years. Unlike other children of his age even at the age of three he couldn’t walk talk or behave like others. It was then we took him to doctor in government hospital who said, my son was mentally retarded. I was told there is no cure to it only certain medication will help him fight the condition. With time his condition deteriorated.”
Rajeshwari is a native of Hoovinahadagali, a taluk located 93 km away from Bellari district. She lives in KM Tanda village and she and her husband earns a living by farming on a small piece of land near her home.
At the age of 13, when Rajeshwari wanted to study her family fixed her marriage to her maternal uncle Vishwanath. As she recalled the days she said, “I was too young to understand anything then, my parents just told me that my maternal uncle will be my husband.”
Halting the conversation, Rajeshwari sluggishly made her way out of the cramped room. As she moved towards another poky room she turned around to ask “ tea or coffee?” Finally after forty five minutes, a slight smile was seen on her face while she served tea.
Rajeshwari had seven children out of which three were mentally retarded, two were physically handicapped. And the other two children died after two to three months of their birth. Their cause of death is still a mystery as the doctor couldn’t figure it out.
All her three children who were victim of mental retardation died fighting their condition. Among them , Nilkanth fought his ailing condition the longest but despite a strong fighter he lost his life in 2018. Rajeshwari said, “ Had he not been a strong fighter he would not have survived these many years.”
Sipping her tea she said I wish I had known the medical effects of marrying in blood relation(consanguinity). Since I know it now in our KM Tanda village we make sure to create awareness about it. Earlier our village was famously known for consanguineous marriages. Most children in our village are either physically or mentally retarded. But now the numbers of consanguineous marriages have come down in our village as we know how it medically ruins our children lives. Earlier there was no awareness about it so we and even our parents fell prey to it.” Rajeshwari stooped forward to lift the pile of bamboo sticks. While moving towards the stack of hay, her eyes stared at her two children who were playing together; the pair wished they live long unlike her five children whom she lost.
Mental retardation or intellectual disability is characterized by significant limitations and below-average intelligence or mental ability . People suffering from it lack skills necessary for day-to-day living. Their intellectual functioning (reasoning, learning, problem solving) and adaptive behavior are limited.
A Family Study of Consanguinity in Children with Intellectual Disabilities in Barwani, India proved how Intellectual disability (ID) can be genetically carried through consanguineous marriages. Consanguinity can be associated with the ID, epilepsy, and mental illness. In tribal and non tribal population consanguineous marriages are more common where it is closely connected to intellectual disability.
According to (NS-ARID) Genetic factors cause 25% to 50% of Intellectual Disability. Genetically, psychologically, physically children resemble their parents. Like good genes, defective genes carrying diseases also gets inherited among children. The defective genes are carried from relatives to children through consanguineous marriages.
Consanguineous marriages are common in India. Its practice has a deep rooted culture associated with it which differs with geography religion and caste. In South India the rate of these marriages is as high as 40%. A defective gene of lower cognitive ability gets transferred to the children. A clinical study in Southern parts of India sates that 30% of children suffering from ID in are born to parents who are consanguineous related.
Dr Sandeep SR practicing in the Taluk Hospital said “Through consanguineous marriages hidden genes gets expressed. There are 50% chances of the recessive genes to get expressed which is a major cause of mental retardation or intellectual disability. This is the reason why consanguinity is not medically preferred.”
Stumbling upon cases of Mental Retardation in the Taluk initially came as a surprise as the place seemed so peaceful and serene.
Vijaya lakshmi a 25-year-old inhabitant of KK Tanda village a few kilometers away from Rajeshwari’s place was struggling hard to switch on the new motor. She was holding her daughter in one hand and with another hand she was struggling to switch on the motor which apparently seemed to have some technical issue.
From a distance she smiled; she then halted her fist fight with the motor and waved. Looking at her 5 year old Vijaylakshmi said “This is my daughter Ragini, unlike her elder sister neither she can talk , walk or do other activities.”
Ragini is Mentally retarded. She is beautiful but unlike other girls of her age in the neighborhood, she can neither play nor talk. She would stare at her mother for the longest hours and Vijaylakshmi had to understand the need of her daughter. As she tried to put her daughter to sleep, Vijayalakshmi tugged strands of hair behind her ears which was disturbing her. Gently patting her daughter she made sure Ragini is asleep by intermittently looking at her face. When she was sure enough Vijayalakshmi took baby steps backward. She slowly opened the door and looked back with a sigh of relief as Ragini was fast asleep.
She said “It is extremely difficult to put her to sleep. But if I don’t put her to sleep now she will not let me speak at all.”
Ragini was diagnosed with MR when she was two years old,her cognitive abilities were lacking. “This condition cannot be cured, we can only give medicines,” a doctor said to Vijayalakshmi. Since then Ragini is on medication. This ailing condition neither let her study nor let her learn other activities.
Making her way to a shady area Vijayalakshmi said “Its not only about how my daughter is dependent on us, it is also about how my work and entire schedule is restricted by my daughter’s condition. We are poor people we cannot afford costly medicines that will ease her condition. We expect better medication and doctor facility in the Taluk that will help us deal with MR patients.”
Her husband Girish said “Earlier my wife used to help me in my work but after Ragini was diagnosed with MR my wife’s entire activity is restricted. This has taken a financial toll on my work. We sometimes plan of taking our daughter to other doctors in city but our financial condition doesn’t permit that Vijaya went inside her house. Opening a door to a small room she showed a tiny room that they have arranged for Ragini. The room according to them was the best present they could ever give their daughter. Vijaya continued, “My elder daughter is absolutely fine without any cognitive disorder. When we asked the cause for Raginis condition the doctors failed to give an answer.”
Vijayalakshmi and her husband were not in a consanguineous marriage. This evidently proved that there are other causes of Mental Retardation apart from consanguinity that is daunting the Taluk.
Dr Sandeep SR said, “ Sometimes it is difficult to detect the cause of MR. There are many causes of MR but only 30 to 40% are detected. Majority of causes are still unknown.”
As Vijaya’s elder daughter Rashmi was absolutely fine, it was difficult to detect what led Ragini suffer from this. The situation was mysterious enough as Vijaya confirmed that since birth Ragini never met with an accident. Her delivery was normal and she cried at the time of her birth.
DR Nikhil R MD in Medicine who treats MR patients in the Taluk said, “Birth Asphyxia, home deliveries, pregnancy category X medicines, environmental causes, unhealthy condition of the mother, fetal alcohol syndrome are some of the other causes for MR.”
According to Human Diseases and Conditions a forum that states the causes of MR explains, Mental retardation as a complex condition, which can be caused by many factors. The exact cause is unknown in about 75 percent of cases. Causes of mental retardation include defects in the genes or chromosome , fetus injuries , early childhood diseases and environmental factors.
Dr Nikhil K , said, “ This problem has always been there. We try to check for preventable causes as once someone is diagnosed with MR there is no cure to it.”
Vinod Ishapuram a 4-year-old was playing on his mother’s lap at his residence. They live in Hirehadagalli a village located 17 km away from Hadagalli village.
A lean, tall and hesitant Sashikala Gopinath, mother of Vinod was reluctant to talk about pregnancy complications in front of her male family members. After being convinced, she said in a low voice “Vinod was born in the 11th month!”
Sasahikala continued, “ I wanted to abort the child because it was an unwanted pregnancy. I was given certain medications for aborting the child. Even after taking the medications the child was not aborted. I faced severe complications as I became anemic during pregnancy. There was immense loss of blood and water from the body. When I visited the Hospital I was told that certain medication at the beginning of the pregnancy has caused the complication. I was informed that I will have an unhealthy baby probably mentally retarded. When Vinod was born the doctors affirmed his condition.”
Sashikala’s father in law also said that the medicines often prescribed are not easily available and costly. Financial struggle often bars them from buying costly medicines. Only the medicines that are freely available are used for Vinod’s treatment. He urged the government to make the costly medicines free so that the treatment of such children is not hindered.
DR Nikhil R said, “Certain drugs used during pregnancy is extremely harmful to the unborn child. This is a archetypal issue. These are known as pregnancy category X medicines. The consumption of such medicines leads to cognitive and physical disability in children. There are studies and documentations that have proved this. Authorized doctors who are properly trained know about these drugs. But mostly unauthorized doctors don’t know about these medicines which they sometimes prescribe. Patients consulting these doctors are more vulnerable. There are meticulous studies regarding them, complete elimination of certain drugs are not possible so comprehensive knowledge about it is important regarding how much quantity is permissible. ”
According to Indian Journal of Pharmaceutical Studies, “the way a drug affects the fetus depends on its stage of development and the strength and dose of the drug. There is limited information on on the effects of drugs in the period of conception and implantation. It is suggested that women who wish to become pregnant should refrain from all unnecessary medications 3-6 months before conception. Certain drugs taken during (15-21 days after fertilization) the period of blastogenesis may act by either killing the foetus or not affecting it at all. Birth defects are most common during the third week and eighth week after fertilization .This phase is known as organogenesis.”
DR Nikhil R said that there is a huge social problem related to consanguinity. During certain times even if people are aware of its consequences they are bound by societal pressure.
Akash Yelagiri a 16 year old boy who looks like he is four years is battling his condition. His parents had a consanguineous marriage. Akash’s father Arivina Ichara said, “ we knew that consanguinity causes retarded child, but since my father had promised his sister so we had to marry. My mother threatened to commit suicide if we were not married. My wife is my niece.”
Fetal alcohol syndrome is another condition that leads to Mental retardation. Doctor Nikhil explains, “Drinking during pregnancy is very harmful as it can be fatal to the fetus. It causes fetal alcohol spectrum disorders (FASD). FASD leads to physical, behavioral and intellectual disabilities which are irreversible and lifelong. In certain villages of the Taluk there is a family custom where all the family members sit together and drink, including pregnant women. One of the rampant cause of MR in this taluk is FASD.”
Gouramma Kouri a medium stature girl resting on her father’s arm came out with a wide smile on her face at her residence in Devanagoahalli. Clinging to her father’s arm she sat on a chair. She continuously looked at her father as if to find an answer to why these strangers have wished to see her . She is a 27 year old girl who is battling her condition since she was born. She is a victim of birth asphyxia. Birth Asphyxia is defined as the deprivation of oxygen to a newborn infant. During the birth process it can cause physical harm, usually to the brain which has a long lasting effect.
Dr Sandeep SR said, “Even if for 30 seconds the brain is deprived of oxygen it can have severe consequences. In such cases a child is expected to be a victim of Mental retardation.”
Gouramma was a not born in Hospital. Kori Veeranna her father is a school teacher. He said, “ In 1991 there was no hospital in the Taluk. Gouramma was born at home. At that time our village was far from a hospital and there was no proper facility to reach there during pregnancy. Neither was I financially strong to restore to some other measures to take my wife to a nearby hospital. When Gouramma was born she was hit, she had injured the right side of the brain. Had there been medical facilities in our Taluk then, this could have been avoided.”
Dr Salim Ali a retired government psychiatrist in the region who treats the MR patients said, “ Once a patient is diagnosed with MR there is no cure as it is a brain injury. The mothers have to teach their children self help technique so that they can tackle basic things.”
Once in a month Dr Salim Ali visit the Taluk hospital and prescribe medicines to the MR patients. The medicines that are available from Government’s side are given free of cost. The medicines that are unavailable from the government’s side have to be bought at one’s own expense.
Mental Retardation cannot be cured . But it can always be prevented. The preventable causes should be looked into so that there is basic awareness about it. Dr Nikhil said, “If awareness about preventable causes is created then the rampant rise in the MR cases can be tamed.”
A doctor who did not wished to be identified said,, “ There is no special infrastructure in hospitals to treat MR patients in this taluk. They can’t be cured completely but their condition can be made better with better amenities in the hospital. The once in a month facility for a specialist should be increased so that there is no gap in regular checkups of the patients.”
Dr. Rajani.P, Deputy Director (Mental Health), Health and Family Welfare Department, said, “ Karnataka is in a much better position than other states. There are some states where there are no psychiatrists, in this regard Karnataka is doing well in the health sector. We have district hospitals and medical colleges in all the districts. We have Psychiatry department which has psychologists, psychiatrists and social workers we also have District mental health programs that create awareness about various issues of Mental health and sensitize people about the facilities available. We have a program called Manu Chaitanya, super Tuesday clinics where on selected Tuesdays mental health professionals will go to Taluka hospitals and attend patients. We are also working on preventive activities and trying to improve the technical aspects.”
Multipurpose Rehabilitation Officer , Manjunath said, “ Niramaya Scheme was to be implemented in the Taluk long ago but unfortunately it is still not implemented. It was to provide healthy cards and free checkups to MR patients with just the investment of Rs 360 per year.”
NIRAMAYA is Health Insurance Scheme for the welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities as listed in the National Trust Act.
However, Dr. Rajani.P, stated, “ As far as I know the NIRAMAYA scheme is in place in the taluk. But there is no awareness regarding it. To avail the benefit of the scheme people have to enroll, once they enroll they can have the facilities. Since it is brought to my notice I will inform the officers to immediately cater to create awareness about the scheme.”
The Deputy Director added, “Over the years people are reporting more on mental health, this indicates awareness. We will try to look into the matter more intensively so that more people can benefit from better infrastructures and medicines.”
In the taluk the doctors are not sure about the exact cause of Intellectual Disability. Dr Nikhil, said ” There is no particular cause for it. The main reason behind the rampant cases of mental retardation in the taluk is still unknown. However, if people are aware about the preventable causes, cases of MR can always be avoided. Also, nutritious food to some extend can help in preventing MR. It can also improve the child’s health over years.”