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Living with Congenital Heart Disease

    Living with Congenital Heart Disease

    The most common birth defect worldwide is congenital heart disease. This affects millions of newborns every year.

    Congenital heart disease (CHD) is defined as a birth defect that involves the structure of the heart and the way it works. The deformities can involve the walls, valves, arteries, and veins of the infant’s heart. This can lead to irregularities in the flow of blood throughout the body.

    The cause of this defect among most babies is unknown. But here are some possible causes:

    • Genetics
    • Environment
    • Mother’s diet or health condition
    • Medications taken during pregnancy

    There are different types of congenital heart disease in varying degrees.

    For every four babies diagnosed with this disease, one of them will develop a critical congenital heart defect. This means that they will need to undergo surgeries or other procedures during their first year of life.

    For some, the case may not be as severe to warrant these procedures.

    Dealing with congenital heart disease is never easy, it becomes a lifelong struggle for both the parents and the child. But with the many studies surrounding this disease, living with it has become easier.

    Here are a few congenital heart disease management tips to guide you if you or anyone you know is dealing with it.

    Living with Congenital Heart Disease

    Learn about your condition and educate others

    One of the most crucial congenital heart disease management tips is becoming an expert and advocate of this disease.

    While it is important to know everything about it, it is equally important to be discerning as well. It is easy to become overwhelmed by all the information available on-hand. Make sure to get the information from reputable medical resources and experts. Don’t be afraid to ask your doctor.

    Advocating for the disease not only raises awareness, but also helps the child as they deal with the outside world. Part of the congenital heart disease management tips is to educate the people around you.

    This includes the school staff, family members, and even friends that you and your child will encounter on a more regular basis. Educating them about the disease will help them understand the condition, and how to work around it when your child’s around.

    It is also important that, as the child gets older, they know and understand the condition that they are living with. Gradually offering them more information about their condition helps them understand what they are going through. This will also help them lead an independent life by knowing how to manage it themselves.

    Medical guidance and establishing good habits

    Not everyone with a congenital heart disease requires urgent treatment. Some may need minimal medical care, while some will have to undergo a few procedures as they get older. Following congenital heart disease management tips can significantly help your child lead a more normal life.

    One of the most basic steps that should never be overlooked is regularly having a consultation with your doctor. This is both with your family doctor and your heart doctor or cardiology specialist.

    The primary care physician can oversee your child’s overall health, which can be done through regular check-ups. Visits to the cardiologist will ensure that your child’s condition is managed properly.

    The likelihood of getting common childhood illnesses is the same between a child with CHD and one without. Parents should refrain from thinking that extra medication is needed when dealing with common illnesses or preventing infections. One of the easy and simple congenital heart disease management tips you can teach your child is good hygiene and good nutrition.

    Frequent handwashing, especially during flu season, should be practiced. Avoid contact with the ill or crowded places if the child has a particularly weak immune system. Standard immunization must always be followed, along with any special monthly immunization suggested by the doctor.

    Good dental hygiene can also go a long way for a child with congenital heart disease. This helps keep them from getting infections like Infective Endocarditis; their condition makes them more susceptible to this. Infective Endocarditis is caused by bacteria that can settle in the heart lining, a heart valve, or a blood vessel.

    These congenital heart disease management tips may seem simple. Some of these tips when overlooked can be survived by a child with a normal heart. But for someone with congenital heart disease, it can lead to more complications. It is important to always be extra mindful of these things.

    Leading a healthy lifestyle

    Keeping the heart healthy is not limited to taking the prescribed medications. Food plays a big part in maintaining a healthy heart. It is highly recommended that you follow a diet that helps keep bad cholesterol away and lowers blood pressure and blood sugar. It should help in losing weight when needed or maintaining it when a reasonable body weight has been reached.

    As part of congenital heart disease management tips, here are a few suggestions in preparing a well-balanced meal:

    • Limit the intake of saturated fats, which can be found in animal products.
    • Avoid artificial trans-fat.
    • Take a more plant-based approach when it comes to your diet. Try to incorporate more vegetables, fruits, whole grains and legumes in meals. These are great sources of fiber and other nutrients that are good for the heart.
    • Balance each meal with protein-rich foods like lean meat and fish.
    • Stay away from red meats and high-fat dairy products. The cholesterol in these food items can raise blood cholesterol levels.
    • Avoid sugary food and serve the right kind of carbs. Choosing brown rice, oatmeal, quinoa or sweet potatoes can help control blood sugar levels.
    • Try to cut back on sodium, because too much of it can be bad for the blood pressure. Use herbs, spices, and condiments instead to give food more flavor.

    Taking care of heart health with exercise

    The benefits of physical exercise can be reaped by everyone, including those who may have congenital heart disease. Research has shown that consistent moderate exercise is safe and is beneficial to one’s health. It is still important to discuss any changes in the diet or exercise routine with a doctor to be able to determine the best type of exercise allowed depending on the condition.

    In general, the best and safest form of exercise that can be done is aerobics. It increases the heart rate enough and enables heavy breathing without being too strenuous. Other recommended activities include:

    • Walking
    • Swimming
    • Biking
    • Jogging
    • Hiking
    • Sports like basketball, tennis and volleyball are also good aerobic-type exercises

    One of the congenital heart management tips that involve physical activity is being mindful of one’s breathing. One should still be able to carry on a conversation despite breathing hard and fast from increased activity.

    Most of the time, people with congenital heart disease check their heart rate during or after a strenuous activity. The target heart rate should be 70%-80% of their predicted maximal heart rate.

    Key Takeaways

    Getting diagnosed with a congenital heart disease should not be treated as a life sentence. Take into consideration today’s advancements in the medical field that can help manage this type of disease.

    As long as one’s health is overseen by a doctor and congenital heart disease management tips are followed, a person with congenital heart disease can expect to lead a normal, healthy life.


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    Hello Health Group does not provide medical advice, diagnosis or treatment.


    Global birth prevalence of congenital heart defects 1970–2017: updated systematic review and meta-analysis of 260 studies https://academic.oup.com/ije/article/48/2/455/5345120 Accessed 7 June 2020

    Congenital Heart Defects https://medlineplus.gov/congenitalheartdefects.html#summary Accessed 7 June 2020

    What are Congenital Heart Defects? https://www.cdc.gov/ncbddd/heartdefects/facts.html Accessed 7 June 2020

    Challenges Faced by Parents of Children with Congenital Heart Disease https://www.healthychildren.org/english/health-issues/conditions/heart/pages/challenges-faced-by-parents-of-children-with-congenital-heart-disease.aspx Accessed 7 June 2020

    Heart Health Recommendations For Those With CHD https://www.heart.org/en/health-topics/congenital-heart-defects/care-and-treatment-for-congenital-heart-defects/heart-health-recommendations-for-those-with-chd Accessed 7 June 2020

    Special Needs For Children with a Congenital Heart Defect https://www.heart.org/en/health-topics/congenital-heart-defects/care-and-treatment-for-congenital-heart-defects/special-needs-for-children-with-a-congenital-heart-defect Accessed 7 June 2020

    Congenital Heart Defects and Physical Activity https://www.heart.org/en/health-topics/congenital-heart-defects/care-and-treatment-for-congenital-heart-defects/congenital-heart-defects-and-physical-activity Accessed 7 June 2020

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    Written by Angela Luz Tarriela Updated Nov 16, 2020
    Medically reviewed by Mike Kenneth Go Doratan, MD