When a 15-day-old baby, who had a bout of mild diarrhoea and vomiting became severely dehydrated, the parents, though worried, did not sense something could be seriously wrong. However, they were shocked when their doctor diagnosed the baby with Congenital Adrenal Hyperplasia (CAH).
CAH is an inherited disorder that affects the adrenal glands where the glands cannot produce cortisol and aldosterone, and instead produce an unwanted excess amount of androgens.
A child with CAH lacks enzymes the adrenal glands use to produce hormones that help regulate metabolism, the immune system, blood pressure, and other essential functions. Parents with children suffering from it often have great difficulty in the upbringing of the child, including treatment, getting school admission and other support issues.
For the first time, Shyam Nair and Deepa Kannan, parents of a CAH child, have started a support group called ‘CAH Support India’ ( www.cahindia,org ) involving a community of parents, grandparents and caregivers of CAH children. The International Coalition for Endocrine Patient Support Organisations worldwide has listed this support group as the first such group for endocrine disorders in India.
The couple has also created a closed Facebook group for parents and endocrinologists https://www.facebook.com/groups/433557750183212/ and a Facebook page called Omkar’s journey with Congenital Adrenal Hyperplasia to chronicle all possible events in the life of a child with CAH . The link is https://m.facebook.com/Omkars-journey-with-Congenital-Adrenal-Hyperplasia-872407369539040/
Shaila S. Bhattacharyya, paediatric endocrinologist at Manipal Hospitals, who is also part of the support group, said: “A CAH child gets severely dehydrated even with a mild episode of diarrhoea and needs hospitalisation, which is stressful both for the child and the caregivers.”
Although about one in 10,000 children are born with CAH, awareness about the condition is low. It is either not detected early or is misdiagnosed and turns fatal in most children within months of their birth. A neonatal hormone test 17-OHP should be done to screen for CAH in children before symptoms appear. “However, not all hospitals do this test,” the doctor added.
Ms. Deepa Kannan, a yoga teacher, said she and her husband are trying to spread awareness about the condition, which is not known even in educated circles. “Having experienced the challenges in bringing up our child, who is seven years old now, our aim is to support parents and help them in bringing up their children,” she told The Hindu.
Narrating how difficult it is for CAH children to get admission in regular schools as the child needs continuous monitoring, she said the aim of the support group is to change this mindset of schools. “Such discrimination towards children for no fault of theirs is unfair,” she said.