Navigating Down Syndrome In Kashmir – Kashmir Observer

Srinagar- In September 2015, Rizwan Ahmad and Nargis welcomed a child boy after seven years of marriage. The enjoyment for his or her households knew no bounds. Nevertheless, their preliminary euphoria settled into a brand new actuality when docs knowledgeable them about their son’s Down syndrome prognosis.

“We couldn’t imagine it,” mentioned Rizwan, 44, a resident of North Kashmir’s Bandipora district. ” The docs talked about that whereas late marriage could be a issue, there are different causes of Down syndrome as effectively,” Rizwan added.

Well being specialists clarify that DS happens when the fertilized egg carries three copies of Chromosome 21 as a substitute of the same old two. Sometimes, a child is born with 46 chromosomes. Infants with Down syndrome have an additional copy of one in every of these chromosomes, chromosome 21. A medical time period for having an additional copy of a chromosome is ‘trisomy.’ Down syndrome can also be known as Trisomy 21. 

This additional copy adjustments how the infant’s physique and mind develop, which may trigger each psychological and bodily challenges for the infant.Down syndrome causes a definite facial look, mental incapacity, and developmental delays. It might be related to thyroid or coronary heart illness.

This situation is thought to be probably the most readily identifiable neurodevelopmental genetic issues on account of its distinctive bodily and cognitive traits, making it detectable via genetic testing. 

In keeping with research, Down syndrome is the commonest chromosomal abnormality which happens with a frequency of 1 in 600 to 1 in 1000 newborns.  Notably, World Down Syndrome Day is widely known on March twenty first annually in recognition of individuals with Down’s Syndrome having three copies of chromosome 21 (21/3).

Elevating a toddler with Down syndrome can current important challenges. Sadly, on account of a scarcity of assist and assets, some households in Kashmir really feel overwhelmed, resulting in a heartbreaking pattern of newborns being deserted.

The pattern, in keeping with baby specialists, is altering as a “sense of acceptance”  is taking maintain amongst mother and father.

Take the case of Rizwan and Nargis. After remaining in grief and shock for every week, the mother and father got here out of the denial mode and determined to maintain their solely baby.

“That is from Allah, what can we do,” mentioned Rizwan, including, “Our love for our baby continues to develop and stays unchanged.”
Dr. Suhail Naik, Assistant Professor on the New Kids’s Hospital, GMC Srinagar, spoke of the immense love and dedication he has witnessed from mother and father elevating youngsters with Down syndrome.

“It’s a great signal however  these mother and father want some education and steering to discover ways to maintain their baby at house,” Dr. Naik mentioned. “These youngsters want particular providers.” 

Dr. Naik mentioned that DS is a quite common genetic dysfunction all around the world and in Kashmir as effectively and late marriage is the first motive for a kid with down syndrome. 

“The delivery of a kid with down syndrome invariably is dependent upon the age of the mom. The older the mom, the upper the possibilities of having a toddler with Down syndrome,” Dr Naik added. 

He additional defined that the illness happens due to nondisjunction of Chromosome 21. “The Chromosome has to separate however with ageing that Chromosome 21 fails to separate,” he added. 

A number of research point out that moms of kids with Down syndrome face important stress and sometimes want to regulate their careers, funds, and life.

“There’s a want for coaching programmes to assist mother and father address the issues confronted by their youngsters with Down syndrome. Stakeholders within the schooling sector might assist on this regard,” one research discovered. 

The mother and father, in keeping with the research, turned anxious and apprehensive when their youngsters didn’t develop speech, and when  behavioral  issues  turned  tough  to  handle.  

In keeping with a study, revealed in 2021 by a bunch of students, trisomy 21 stands as a serious contributing issue for mental incapacity. 

The research titled, “Sample of cytogenetic abnormalities in syndromic psychological retardation/mental incapacity in Kashmir area of Jammu and Kashmir” reveals that the frequency of free trisomy and superior maternal age in J&Okay is way greater as in comparison with that reported by totally different research throughout India. 

Dr Yasir Relatively, a toddler psychiatrist mentioned that many of the sufferers with down syndrome develop behavioral adjustments and Alzheimer (a kind of dementia).

“..nonetheless many of the sufferers with down syndrome  are jolly in nature and the mother and father don’t understand them as burdensome,” Dr Yasir added.

In Kashmir, numerous youngsters are born with Down syndrome and the mother and father discover it very arduous to seek out faculties for his or her Kids. Though there are few non-public NGO’s who’ve began some particular houses for these youngsters. Nevertheless, these particular academic assets are principally concentrated in Srinagar, with a restricted quantity accessible in different components of Kashmir.

Commissioner Secretary, Social Welfare Division, Sheetal Nanda informed Kashmir Observer that In a transfer in the direction of larger inclusion, the college schooling division is engaged on a coverage for these childrens.

“We don’t have particular faculties for these youngsters as such however the schooling division is engaged on inclusive schooling.This initiative will see youngsters with Down syndrome built-in into common faculties with the assist of specifically skilled educators,” she mentioned.

The coverage of the federal government, in keeping with Nanda, is that these youngsters mustn’t really feel omitted and aloof. “They need to be a part of the system.” 

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