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    LEARN ABOUT CONGENITAL HEART DEFECTS

    THE SITUATION

    • Congenital heart defect (CHD) is the most frequently occurring congenital disorder.
    • The common types of Congenital Heart Defects are Patent Ductus Arteriosus, Atrial Septal Defects, Ventricular Septal Defects, Tetralogy of Fallot, Total Anomalous Pulmonary Venous Connection, Transposition of Great Arteries, Ebstein’s Anomaly, Aortic Arch Repair & Coarctation, Truncus Arteriosus, Heart Block, AV canal defect, AP Window, Double Outlet Right Ventricle, Truncus Arteriosus, Hemitruncus, Taussig-Bing Anomaly, Coarctation of Aorta and Pulmonary Atresia.
    • With rapid advances in diagnosis and treatment of CHD, vast majority of children born with CHD in high-income countries reach adulthood
    • However, this is not the case for children born in low-and middle-income countries (LMIC) as such advanced care is not available for all children
    • Considering a birth prevalence as 9/1000 the estimated number of children born with CHD every year in India is more than 200,000 per year
    • Of these, one-fifth are likely to have serious defect, requiring an intervention in the first year of life
    • Currently advanced cardiac care is available to only a minority of such children
    • A number of cardiac care centers have come up in India over the last decade
    • The total number is just over 60; ten of these can be considered high volume centers (more than 500 cardiac surgeries per year)
    • However, most are in the private sector and are not geographically well-distributed
    • The total number of births are much higher in North and Eastern parts of India as compared to rest of four regions (Southern, Western, Central and North-East)
    • Consequently, the total number of babies born with CHD are likely to be much more in regions with high birth rates
    • Based on the information provided by 47 centers in India, there is a clear paradox as many centers are locate in regions with lower burden of CHD
    • Pediatric cardiac care is a team effort involving cardiologists, surgeons, anesthesiologists and intensive care specialists

    THE CHALLENGES

    • A substantial proportion of births in India occur at home, and the infant is likely to die before the critical, ductus-dependent CHD is diagnosed
    • Frontline health workers and primary caregivers are not sensitized to the problem of CHD
    • A number of them believe that a child with CHD is doomed and will never be able to lead a fruitful life, even if intervened
    • The resources for children heart treatment are not only inadequate but also seriously maldistributed
    • Poverty, which is the greatest barrier to successful treatment of CHD is more common in states with little or no cardiac facilities
    • In most instances, families are expected to pay for the treatment out of their pocket, which they can barely afford
    • Approximately half of the families borrowed money during the follow-up period after surgery
    • Many families lose their wages as they are away from work during care of these children
    • Most cardiac centers, especially that set-up more recently, are in the private sector and may not be affordable for the majority
    • Many hospitals partner with charitable non-government organisations and multinational companies to assist economically weaker families
    • About 20% of cardiac surgeries are funded by such organisations
    • Most children with CHD, including those who have undergone an intervention, require long-term care for a good outcome which includes follow-ups as advised.
    • Unfortunately, a large number of children in India, especially those from middle or lower socioeconomic strata, are lost to follow-up due to financial hurdles or lack of awareness

    THE HOPE

    • Fortunately, the rate of hospital deliveries has significantly increased due to several incentivized schemes by the Government of India
    • To make meaningful reductions in mortality and morbidity from CHD, it is imperative to focus on comprehensive newborn and infant cardiac care
    • Establishing more centers for cardiac care with sophisticated technology and a motivated team of health professionals
    • There should be at least one center in each populous state, so that families do not have to travel long distances to places with different local environments and languages

    Reference: SAXENA, A. Congenital Heart Disease in India: A status report, Indian Pediatrics 2018, Volume 55, p.1075-1082p.1075-1082

    Frequently Asked Questions

    • Difficulty in breathing • Difficulty in taking feed • Poor weight gain • Bluish discoloration of lips and nails • Repeated chest infections

    The exact cause of this disease is still unknown. Some factors however can predispose a foetus to developing a congenital heart defect. These are:

    • Genetics • Hereditary • Exposure to viruses such as Rubella during pregnancy • Certain medications taken during pregnancy • Smoking • Consumption of Alcohol • Pregnant lady having diabetes.

    Open Heart Surgeries are generally required for moderate to severe congenital heart defects. For all children born with a congenital heart defect, it is important to maintain regular follow-ups with the pediatric cardiologist even after the child heart treatment. This ensures that the child is progressing well.

    It depends on the type and seriousness of the defect. For complex defects a child will die, if untreated. For simple defects a child may not die if congenital heart defect treatment is not provided but can develop other complications. An untreated heart defect can have adverse consequences on the health and development of the child.

    Congenital Heart Defects are of different types and vary in their degree of severity. Some heart defects are mild without significant symptoms and may not need any treatment. A critical heart defect will need to be treated immediately else the child will not be able to survive or will have long term complications. It is important to follow the advice of a pediatric cardiologist.

    Congenital Heart Defects are of different types and the cost of the treatment varies based on the severity of the defect and the type of treatment. In India, on an average, the cost of treatment varies between Rs 1.5-3 lakhs. Financial support for interventions and free heart surgery for child in India is available for families that cannot afford the same.

    Congenital Heart Defect treatment depends on the specific type of the heart defect and how severe it is. Some heart defects are very mild and may not require any treatment. For small holes, the hole in heart treatment may only require observation of the child and the hole may close on it’s own. Other types of defects may get treated with medication and non-surgical procedures while some may require a surgery.

    Fetal Echocardiography is a test undertaken to look for a heart defect before a baby’s birth. The test is usually done when the mother is 14-18 weeks pregnant. The test is like an ultrasound and uses sound waves to understand the structure of the baby’s heart and whether it is working properly. Not all pregnant women need to go through a fetal echocardiography. It is only when the doctors spot a problem in the baby’s heart during the routine ultrasound that fetal echocardiography is recommended.

    With improvements in medical technology, Congenital Heart Defects can be detected through multiple tests. Some of these are:

    • Pulse Oximetry • Electrocardiogram (ECG) • Echocardiogram • Chest X ray • Cardiac Catherization

    It is important for you to follow all the guidelines given by the pediatric cardiologist. If the child has been treated and the medical team treating the child has given the go ahead for your child to participate in all activities that his peers do, then it is perfectly fine. It is important however, to remain in touch with the child's cardiologist at all stages of growth as the situation can change from one stage to another.

    As the exact cause of CHD is still not knows, there is little one can do to prevent it. However, if you are pregnant or know someone who is pregnant, then the following can reduce the risk:

    1. Avoid drinking alcohol or taking medication during pregnancy 2. Ensure that the mother when pregnant is vaccinated against Rubella and Flu 3. If the mother has diabetes, make sure it is controlled 4. The mother should avoid exposure to harmful chemicals 5. The mother should check with your doctor before taking any medications 6. Ensure regular ante natal visits.

    A leading heart care foundation in India we support lesser privileged children who need a medical intervention for a Congenital Heart Defect. The monthly income of families of these children is Rs. 20,000 or lesser. If you know of a child whom we can support, please write to us at [email protected]. Alternatively, you can speak to a representative of the Foundation, on +91 96506 03438

    Still Have A Question?

    If you still have a question feel free to speak to our team on +91 96506 03438
    You can also write to us on [email protected]