Srinagar- In September 2015, Rizwan Ahmad and Nargis welcomed a baby boy after seven years of marriage. The joy for their families knew no bounds. However, their initial euphoria settled into a new reality when doctors informed them about their son’s Down syndrome diagnosis.
“We couldn’t believe it,” said Rizwan, 44, a resident of North Kashmir’s Bandipora district. “The doctors mentioned that while late marriage can be a factor, there are other causes of Down syndrome as well,” Rizwan added.
Health experts explain that DS occurs when the fertilized egg carries three copies of Chromosome 21 instead of the usual two. Typically, a baby is born with 46 chromosomes. Babies with Down syndrome have an extra copy of one of these chromosomes, chromosome 21. A medical term for having an extra copy of a chromosome is ‘trisomy.’ Down syndrome is also referred to as Trisomy 21.
This extra copy changes how the baby’s body and brain develop, which can cause both mental and physical challenges for the baby.Down syndrome causes a distinct facial appearance, intellectual disability, and developmental delays. It may be associated with thyroid or heart disease.
This condition is regarded as one of the most readily identifiable neurodevelopmental genetic disorders due to its distinctive physical and cognitive characteristics, making it detectable through genetic testing.
According to studies, Down syndrome is the most common chromosomal abnormality which occurs with a frequency of 1 in 600 to 1 in 1000 newborns. Notably, World Down Syndrome Day is celebrated on March 21st each year in recognition of people with Down’s Syndrome having three copies of chromosome 21 (21/3).
Raising a child with Down syndrome can present significant challenges. Unfortunately, due to a lack of support and resources, some families in Kashmir feel overwhelmed, leading to a heartbreaking trend of newborns being abandoned.
The trend, according to child experts, is changing as a “sense of acceptance” is taking hold among parents.
Take the case of Rizwan and Nargis. After remaining in grief and shock for a week, the parents came out of the denial mode and decided to take care of their only child.
“This is from Allah, what can we do,” said Rizwan, adding, “Our love for our child continues to grow and remains unchanged.”
Dr. Suhail Naik, Assistant Professor at the New Children’s Hospital, GMC Srinagar, spoke of the immense love and dedication he has witnessed from parents raising children with Down syndrome.
“It’s a good sign but these parents need some schooling and guidance to learn how to take care of their child at home,” Dr. Naik said. “These kids need special services.”
Dr. Naik said that DS is a very common genetic disorder all over the world and in Kashmir as well and late marriage is the primary reason for a child with down syndrome.
“The birth of a child with down syndrome invariably depends on the age of the mother. The older the mother, the higher the chances of having a child with Down syndrome,” Dr Naik added.
He further explained that the disease occurs because of nondisjunction of Chromosome 21. “The Chromosome has to separate but with aging that Chromosome 21 fails to separate,” he added.
Several studies indicate that mothers of children with Down syndrome face significant stress and often need to adjust their careers, finances, and lifestyles.
“There is a need for training programmes to help parents cope with the problems faced by their children with Down syndrome. Stakeholders in the education sector could help in this regard,” one study found.
The parents, according to the study, became anxious and worried when their children did not develop speech, and when behavioral problems became difficult to manage.
According to a study, published in 2021 by a group of scholars, trisomy 21 stands as a major contributing factor for intellectual disability.
The study titled, “Pattern of cytogenetic abnormalities in syndromic mental retardation/intellectual disability in Kashmir region of Jammu and Kashmir” reveals that the frequency of free trisomy and advanced maternal age in J&K is much higher as compared to that reported by different studies across India.
Dr Yasir Rather, a child psychiatrist said that most of the patients with down syndrome develop behavioral changes and Alzheimer (a type of dementia).
“..however most of the patients with down syndrome are jolly in nature and the parents do not perceive them as burdensome,” Dr Yasir added.
In Kashmir, a number of children are born with Down syndrome and the parents find it very hard to find schools for their Children. Although there are few private NGO’s who have started some special homes for these kids. However, these special educational resources are mostly concentrated in Srinagar, with a limited number available in other parts of Kashmir.
Commissioner Secretary, Social Welfare Department, Sheetal Nanda told Kashmir Observer that In a move towards greater inclusion, the school education department is working on a policy for these childrens.
“We don’t have special schools for these kids as such but the education department is working on inclusive education.This initiative will see children with Down syndrome integrated into regular schools with the support of specially trained educators,” she said.
The policy of the government, according to Nanda, is that these kids should not feel left out and aloof. “They should be part of the system.”
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