The Department of Pediatric Cardiology at organized a two-day symposium on Adult Congenital Heart Disease (ACHD). The two-day program, titled “Growing up with Congenital Heart Disease” saw leading ACHD specialists from India and the world discuss various aspects of birth heart defects.
Individuals shared their triumphs and challenges of growing up with congenital heart disease and its impact on quality of life. They highlighted the need to create more awareness about congenital heart diseases in the society.
Said Dr. Navaneetha Sasikumar, who oversees the Adult Congenital Heart Disease Program at “In India, treatment for congenital heart diseases has developed over the last few decades. In the early 2000s, there were only a few centers treating children with CHD. Now, this number has grown significantly. It is important to spread awareness about heart defects, especially in a nation like India. Adult patients of CHD face challenges such as physical limitations, psychological disturbances due to chronic afflictions, social adjustment issues, and learning difficulties. As the medical field is highly advanced now, most of these heart defects can be corrected. For those that are beyond correction, patients can seek palliative procedures.”
she added: “In most CHD cases, patients can lead a normal life after the surgery. However, this is not the case with all. So it is advised to go for regular follow-up so that doctors can identify developing problems and offer the right treatment at the right time. This symposium was an attempt to sensitize the practicing pediatric and adult cardiologists in India regarding the specific challenges that adult patients of CHD face and the solutions. They understood ways to detect issues, treat them, and the significance of follow-ups. Several patients also gathered to discuss their lives and how treatment has changed them and the challenges they face. The results of the research done on this aspect globally and from Amrita Hospital were also presented.”
Kerala is at the forefront regarding dealing with CHD, which is also a public health problem. But at a country level, India is far behind in patient care. India is behind other developed countries in dealing with CHD, not because it lacks biomedical technology or manpower but due to a lack of awareness and government investment, said Ms Amy Verstappen, President of the Global Alliance for Rheumatic and Congenital Hearts (Global ARCH), who also attended the symposium.
Global ARCH is a Not-for-Profit Organization, which aims to improve the quality of patients suffering from CHD worldwide by empowering patient and family organizations. It speaks out for the rights of congenital heart disease and rheumatic heart disease patients through their Rights Campaign and by promoting and supporting patient and family-led advocacy.
During the Covid pandemic, patients with CHD were provided with a fact sheet about Covid written by doctors in Amrita. That fact sheet was translated into 11 languages by Global Arch and shared with patients across the globe. Questions such as whether can Covid infections enter and grow in the pacemaker were raised by the patients, "Such questions can't be answered by regular doctors. It needs specialized doctors," she pointed out.
“The Department of Paediatric Cardiology at Amrita Hospital in Kochi has been providing high-quality services to patients with CHD for the last 25 years. Now it has grown to be one of the biggest and most respected programs providing outcomes comparable to Western standards. The programme currently does 600 to 800 surgeries and catheter procedures every year,” said Dr R Krishna Kumar, Professor, and Head, Department of Pediatric Cardiology Providing details about the Adult Congenital Heart Disease Clinic at Amrita Hospital, Dr. R Krishna Kumar added: “Initiated in 2021, this is the first-of-its-kind clinic in India that offers focused care to operated and unoperated adults with CHD. At the clinic, we check issues during regular follow-ups, educate the patients about their special hearts, why they need lifelong checkups and the impact of an operated heart on their lives. The clinic also offers complex keyhole interventions for patients, including valve replacements without open heart surgery. The clinic is supported by a multidisciplinary team consisting of experts in complex congenital cardiac surgery, complex keyhole interventions, cardiac anesthesia, imaging, and pulmonary hypertension.”
A range of panelists from around the world participated in the event, including Dr Geetha Kandhavello (Malaysia), Dr Worakan Promphan (Thailand), Dr Juan Pablo Sandoval (Mexico), and Dr Philip Moons (Belgium), along with leading national experts from India, including Dr Anita Saxena (AIIMS, Delhi), Dr Sangeetha Viswanathan (Apollo Hospital, Chennai), Dr P. Rajasekhar (AIIMS Delhi), Dr S Radhakrishnan (Amrita, Faridabad), Dr J.M. Tharakan (SCTIMST, Thiruvananthapuram), Dr Amitabha Chattopadhyay (Narayana Superspecialist Hospital, Howrah), Dr Bharat Dalvi (H. N. Reliance Foundation Hospital, Mumbai), Dr K. Sivakumar (Madras Medical Mission Hospital, Chennai), Dr Nageshwar Rao Koneti (Rainbow Children's Heart Institute, Hyderabad), and Dr Robert Coelho (Miot Hospital Chennai).
