Heart skin sleep apnea: challenges of raising a child with down syndrome
Down syndrome, due to an additional copy of chromosome 21, is India’s most common chromosomal disorder. Limited access to special healthcare, lack of inclusive education, and social stigma makes a battle for many families everyday life.
The journey to raise a child with down syndrome in India is full of emotional, financial and social challenges.
An estimated 23,000–29,000 children with Down syndrome are born annually. According to separate studies by the Indian Journal of Pediatrics (2020) and AIIMS Rajkot (2023), only 44% of them survive.
Down syndrome, due to an additional copy of chromosome 21, is India’s most common chromosomal disorder. This is a genetic condition where a person is born with an additional copy of chromosome 21.
It affects physical development, learning ability and sometimes health. People with Down syndrome may have different facial features, development delays and health issues, but with proper care, they can lead to completing life.
Limited access to special healthcare, lack of inclusive education, and social stigma makes a battle for many families everyday life.
Experts have said that initial intervention may make some difference.
“Early intervention is transformative. Speech or motor therapy shows remarkable progress in the nominee for six months. With the right remedies, children with down syndrome can develop motor and cognitive skills that allow them to live a semi-independent life,” Dr. Vijay Sharma, Associate Director and head of neurology and child development of children. Vijay Sharma said.
Individuals with Down syndrome also experience neurological challenges, such as delay in cognitive development, low muscle tones, and epilepsy and early onset of Alzheimer’s disease increases.
“Recent research suggests that neurological intervention and targeted remedies – such as speech and professional therapy – can improve cognitive work and quality of life,” Dr. Praveen Gupta, Principal Director and Chief of Neurology Dr. Praveen Gupta said.
In addition to developmental concerns, children with down syndrome often suffer from serious health issues, including congenital heart disease (CHD).
“About 60% of children with Down syndrome, congenital heart defect (CHD), is a significant concern. Many of these children require corrective heart surgery within the first few years of life. Delay in diagnosis may be a threat to life,” Senior Advisor in Cardiology at PSRI Hospital, Dr. Ravi Prakash warned.
Down syndrome is beyond physical health. According to 2023 studies in perspective in psychiatry care, a significant number of individuals experience psychiatric disorders, with attention deficit and most common diagnosis with overdose disorder (ADHD).
“People with Down syndrome often face anxiety and behavioral challenges, while parents experience significant stress,” Dr. Sneha Sharma said, consultant in psychiatry and drug de-addiction in Aacash Healthcare.
“Psychiatry care helps manage these issues, improves emotional welfare for both children and family,” Dr. Sharma said.
Sleep is another factor that plays a big role in children with down syndrome.
“Intellectual performance is associated with not only genes but also to the functioning of the human brain. Sleep is necessary in running cognitive development, creating long -term memory circuits and maintaining brain plasticity,” Dr. Sameer H. The founder of Dalwai, Developmental Peditician and New Horizon Child Development Center explained.
However, many children with down syndrome suffer from sleep apnea, which deteriorates their sleep quality. “This may require medical intervention, but something that benefits all children with Down syndrome, a certain program, with a night routine that sets them to sleep till 9 pm and ensures 9-10 hours of sleep during night,” Dr. Dalwai said.
Beyond medical intervention, acceptance and inclusion are important. Many parents struggle to find schools, medical centers, or even recreational locations that accommodate their children.
“Teenagers often fight with isolation. Approval begins at home, but extends to schools and workplaces. The mainstream schools should adopt the revised course so that children with down syndrome can study with their peers. Vocational training in art and other subjects can further strengthen them,” Advisor to Pediatrics, and advisory consultations.
Despite these conflicts, there are emerging remedies including stem cell therapy, being discovered to improve cognitive function in children with down syndrome.
Still experimental, these progresses highlight the increasing attention to research and better care.
