Challenges in the Timely Diagnosis and Treatment of Congenital Heart Defect: An Overview
Congenital Heart Defect (CHD) is the most common occurring congenital defect globally. Heart disease in children constitutes 28% of all birth disorders. The birth prevalence of CHD is reported to be 8-12/1000 live births. Considering a rate of 9/1000, about 1.35 million babies are born with CHD each year globally
With improvements in congenital heart defect treatment, children born with a heart disease can lead almost normal lives. However, timely diagnosis and treatment are the keys to this. Unfortunately, there continues to be a big delay in the timely diagnosis of congenital heart defects especially in countries like India. There are many factors that are responsible for the delay in diagnosis:
Lack of awareness among first line doctors and health workers: The symptoms of a congenital heart defects in infants and heart disease in children are often unknown to primary healthcare providers, which causes a delay in making the correct diagnosis. Children with CHD have a variety of clinical traits, which makes the diagnosis more difficult. Cough, dyspnea, and failure to thrive are examples of clinical indicators that might be treated while being mistakenly diagnosed as symptoms of other illnesses. It is not uncommon to find youngsters who lost valuable time getting treated for respiratory conditions like tuberculosis instead of receiving congenital heart defect treatment. General practitioners and, to a lesser extent, paediatricians lack professional training and awareness of the ideal timing for patient referral.
Lack of awareness among parents: very often parents are not aware of the symptoms of heart disease in children. They usually attribute it to weakness and end up seeking medical assistance only when it has already got late. This is especially true in cases where the type of defect is mild and hence the symptoms do not present themselves earlier. The lack of awareness about the symptoms of a heart defect and therefor the necessity to treat the same lead to a poor health seeking behaviour.
Lack of timely screening: In countries like India, prenatal CHD identification and foetal screening remain difficult tasks. In a situation where resources are limited, offering an advanced diagnostic health centre right at the door may not be possible. Fetal echocardiography is a helpful screening method for detecting early heart disease in children and avoiding CHD morbidity and mortality. In nations like India, its use is still mostly insufficient. Before discharging newborns from the hospital, several hospitals throughout the world utilise pulse oximeters to assess their oxygen saturation levels. All hospitals across India still need to adopt this approach.
In addition to a late diagnosis, there tends to be delay in families accessing live altering treatment also. The key reasons for this are:
Cost of treatment: can be a mor prohibitive factor in the timely treatment of congenital heart defects. The cost of intervention is usually high and depending o the type of defect can vary from Rs 1.5-5 lakhs. This is a high among for a large majority of people livening in countries like India. Medical insurance is still relatively an emerging concept in India, leaving the burden of treatment on the family. In addition, a lack of awareness about NGOS that can support the congenital heart defect treatment of their child also contributes to delayed treatment.
Lack of infrastructure: very often in countries like India pediatric cardiac care facilities are unevenly distributed. Majority of the pediatric care centers offering quality care are located in Tier I and Tier II cities and are in the private sector. The process of travelling to these cities and having to spend additionally on transport and stay adds to the burden of cost can influence many families in delaying the treatment untill they are able to organise the necessary support.
Social factors: Social factors also play a huge role in the families accessing treatment at the right stage. This is especially true in cases where girls are diagnosed with a heart defect. The
Alternate Treatment: in countries like India, the easy availability of alternate treatments like Ayruveda, Homeopathy among others also impact the treatment of congenital heart defects in infants, very often families opt for these cheaper, more easily available options and lose precious time.
Undiagnosed CHD poses a significant risk of preventable morbidity, death, and lifelong disability. Additionally, these kids' long-term health is negatively impacted by undernutrition, repeated infections, and failure to flourish. The social development of young kids is also significantly impacted by limitations in daily activities. In the absence of state-sponsored social support, families also suffer severe economic and social effects. Hence it is critical to build awareness at the grassroot to improve the timely diagnosis and treatment of Congenital Heart Defects.
References
Rashid U, Qureshi AU, Hyder SN, Sadiq M. Pattern of congenital heart disease in a developing country tertiary care center: Factors associated with delayed diagnosis. Ann Pediatr Cardiol. 2016 Sep-Dec;9(3):210-5. doi: 10.4103/0974-2069.189125. PMID: 27625517; PMCID: PMC5007928.
Saxena A. Congenital Heart Disease in India: A Status Report. Indian Pediatr. 2018 Dec 15;55(12):1075-1082. PMID: 30745481.
