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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.

    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

    Children's heart treatment refers to medical care aimed at treating Congenital Heart Defects (CHD) or other heart conditions in children. This usually entails open heart surgery or a less invasive Cath Lab procedure. The earlier the child gets treatment for the diagnosed heart defect, the better the outcome. Genesis Foundation, a heart care foundation in India, support lesser privileged children within the age group of 0-18 years with congenital heart disease, to get the best medical treatment for this condition. These children are from the families earning less than Rs. 20,000 per month. Genesis Foundation has built strong partnerships with leading hospitals and has helped several children in getting the necessary medical treatment.

    Congenital heart defect (CHD) is the most frequently occurring congenital disorder. The common types of Congenital Heart Defects in children include Atrial Septal Defects, Ventricular Septal Defects, Tetralogy of Fallot, Total Anomalous Pulmonary Venous Connection and Transposition of Great Arteries. Early diagnosis and child heart treatment are crucial to managing these conditions, and organizations like Genesis Foundation help provide life-saving surgeries for children who need heart treatments but cannot afford them.

    Congenital heart defects in children may be diagnosed during pregnancy or after birth. Common symptoms of congenital heart defects (CHD) include rapid breathing, fatigue, poor feeding, bluish skin, and slow growth. Signs of certain heart defects can be seen on a routine pregnancy ultrasound test. Doctors may hear a murmur, while listening to the child's heart with a stethoscope. They also use pulse oximeter to measure the oxygen level in child’s blood and their heart rate. Further tests, such as an echocardiogram, electrocardiogram (ECG), or chest X-ray, are often used to confirm the diagnosis and identify the specific defect. Once diagnosed, congenital heart defect treatment can be planned, which may involve medication, surgery, or other interventions. For more information, you can visit Genesis Foundation for support and treatment options.

    The Congenital Heart Defect Treatment depends on the type of defect and how severe it is. Common treatments include medications, catheter-based procedures and surgery. The Congenital Heart Defect treatment for severe and critical defects requires immediate intervention to ensure that that baby survives or does not develop a long-term complication. These treatments can be expensive, making it out of reach for many people who struggle to make ends meet daily. Many organizations such as Genesis Foundation are working to financially support the treatment of underprivileged children born with CHD. You can find out more about the NGO and how you can donate to save little hearts, visit, https://www.genesis-foundation.net.

    The success rate of children's heart treatments varies depending on the type and complexity of the heart condition, as well as the type of treatment- catheter-based procedures or surgeries. Genesis Foundation, a children heart foundation in India, provides critical support and access to life-saving heart treatments. Till now we have supported thousands of children battling with CHD with a success rate of 98% at our partner hospitals. If you know any 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.

    To prepare your child for heart surgery or treatment, it is important to talk to your child about the surgery. Give the emotional support and reassurance according to your child’s age. Ensure all medical preparation is according to the doctor’s advice pre and post operation. Stay calm and positive always and pack essentials to ensure your child’s comfort and of course yours. If you're seeking financial support, free heart surgery for children in India is offered by organizations like Genesis Foundation, which helps underprivileged families with the cost of life-saving heart treatments.

    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]

    Disclaimer: The information provided on this website is for general informational purposes only and is not intended as a substitute for professional medical advice, diagnosis, or treatment. Always consult a qualified healthcare provider. Genesis Foundation does not assume any responsibility for reliance placed on the information.