Chennai: In India, for every 800 children, one child is born with Down Syndrome (DS) and the average rounds up to 30,000 such babies every year.
Tomorrow, 21 March, being observed as World Down Syndrome Day, News Today takes a look at the condition, treatment facilities available in Tamilnadu and governmental intervention.
Institute of Child Health and Hospital for Children (ICH&HC), the government-run institution, about three months ago started ‘karyotyping’ to study chromosomal aberrations.
“Fiftytwo children have been diagnosed with the help of karyotyping, among which 18 have been found to have DS, so far,” said ICH Department of Pathology – Professor and Head, Dr S Pappathi.
In addition, the institution assesses the prognosis by performing fluorescence In situ hybridization (FISH). “It is an advanced test that helps in accurate diagnosis of the cell-specific aberration. If MYCN-amplification is discovered, chances of occurrence of neuroblastoma is more,” Dr Pappathi added.
In an attempt to provide early intervention, the hospital does pre-natal screening. The patients are referred from the neighbouring Institute of Obstetrics and Gynaecology (IOG) who will be directed to Madras Medical College for the test.
To improve the quality of life of DS patients, the hospital offers speech therapy, occupational therapy among others and is also building an arts centre.
Explaining about the risk factors, ICH Director, Dr A T Arasar Seeralar, said, “It is a multi-team approach as DS children are prone to blood-related ailments, including leukemia.”
Experts in the city feel that late pregnancy is associated with the syndrome. The presence of a third copy of chromosome 21 leads to Down Syndrome.
“With increasing age, there are chances of genetic error ocurring in the ovary and over time, it keeps accumulating that leads to genetic disorders and DS is the most common. For each age group, there is a set of risks associated. It is less common within the age of 25 and it keeps increasing with every five-year band,” said Rainbow Children’s Hospital senior consultant – paediatric neurology and epileptology, Dr Lakshmi Narayanan.
NEED FOR POLICY-LEVEL CHANGES
In 2016, the Centre passed Rights of Persons with Disabilities Bill in which the number of disabilities was increased from seven to 21. However, Down Syndrome Federation of India (DSFI), an advocacy and parents’ support group, calls for policy intervention.
“The syndrome comes under intellectual disability in the list and is not a separate unit by itself as it is one of the most common genetic disorders in India and across the world. Disability certificate should be given soon after birth with which families from underprivileged sections can get subsidy from the government in several forms, including early intervention,” said DSFI president, Dr Rekha Ramachandran.
The theme for this year’s World Down Syndrome Day is ‘Leave no one behind’ and with regard to that Kauvery Hospital paediatric consultant, Dr Pushkala, said, “In the past, Down Syndrome was misunderstood to be learning disability and the child was looked down upon. However, with the medical field expanding, we feel that such children can academically shine when there is early intervention, leaving no child unattended.”
The doctor stated that there has not been enough awareness about the syndrome among people and urged parents to seek medical advise if they observe abnormal characteristics in the child.