Meeting the challenges of reaching out to Down Syndrome children

It is a moving story, a 13-year journey, overcoming numerous challenges finally leading to a parent with a daughter with Down Syndrome, being able to educate her at a private school in Colombo in a mainstream class.

Education had been the biggest challenge among many others, with rejection by most school authorities being the common experience for parent and Attorney-at-law Chanaka de Silva who explained why he insisted on mainstream schooling for her. "I learnt to stand in a queue, how to handle bullies, to interact with friends. I wanted the very same for my daughter and today looking back I think I achieved that," said Mr. de Silva on behalf of thousands of children with Down Syndrome and their parents.

Urging the medical profession to develop guidelines to improve the lives of these children, Mr. de Silva told a symposium to mark World Down Syndrome Day on March 21 that from the time their daughter was born their lives had been in turmoil. They were given minimum instructions to look after their newborn who required special care and intervention. She had to undergo several surgical procedures including open heart surgery and palatal surgery. While some relatives, friends and medical professionals were helpful and supportive others were not, he pointed out, stressing the need to tell these parents the reality, gently but explicitly.

If the child is described as being mentally retarded who would only be suitable for menial work as adults, it would give a negative impression and hinder the role parents have to play in the subsequent care of the child, Mr. de Silva said, adding that all workers in the health-care setting including the minor staff should be educated on the need to respect these families.

The symposium was organised by the Working Group on Disability of the Sri Lanka Medical Association (SLMA) in collaboration with the Sri Lanka College of Paediatricians at the SLMA'S Lionel Memorial Auditorium at Wijerama Mawatha.

The session was chaired by SLMA'S President-elect for 2013, Dr. B.J.C. Perera while the panel of speakers also included the President of the Sri Lanka College of Paediatricians, Prof. Asvini Fernando who is also Associate Professor in Paediatrics at the Kelaniya Medical Faculty; Professor in Obstetrics and Gynaecology at the Colombo Medical Faculty, Prof. Hemantha Senanayake and two special education teachers Indira Athurupana and Sharmini Seneviratne.

Prof. Asvini Fernando reiterated the importance of early intervention to improve outcomes and presented a scheme to optimize care for children with Down Syndrome. Citing examples of children who have done well in life despite their disability due to the motto "they can do it", she also stressed the need to improve the skills of doctors not only to ensure proper clinical management but also to break the news to parents in a humane manner when a baby with Down Syndrome is born.

Discussing the role of the Obstetrician, Prof. Hemantha Senanayake pointed out the ante-natal diagnostic procedures available in the country to identify a foetus with Down Syndrome. Urging the development of national guidelines on how medical staff should break the news to couples whose foetus is detected with Down Syndrome during pregnancy or when they get a baby with Down Syndrome, he said it is vital for parents to be provided up-to-date information.

Earlier, opening the session, the Chairperson of the Working Group on Disability, Dr. Lalith Wijayaratne underscored the need to identify the strengths of this population and work harder to empower them and Dr. B.J.C. Perera assured that steps would be taken to facilitate the proper care of such children. Dr. Samanmali Sumanasena coordinated the programme.

Aptly showing off their strengths, there was a beautiful dance performance by the children of the Kosala Dullewa Foundation.