Living with Congenital Heart Disease
Fetal Malformations
Obie Editorial Team
Advanced treatments like catheter repair and surgery are not needed for all cases of congenital heart disease. Some conditions are mild enough to be left untreated without reducing lifespan or quality of life, though there are lifestyle changes and health care that must be taken into consideration. If the condition worsens, at any time, further medical treatment may be needed.
Children to Teens – CHD Care
If congenital heart disease is diagnosed soon after birth, parents are prepared for the effects of the condition as the infant ages. There are some cases of congenital heart disease that are not diagnosed until childhood, however, so ongoing care may be an adjustment for parents.
Ongoing care for congenital heart disease starts with regular physical check-ups. Check-ups will take place at the pediatrician and the heart specialist. The frequency of check-ups is determined by the physicians responsible for care.
Medication may be prescribed to reduce the risk of infection. Some congenital heart conditions are associated with bacterial endocarditis. This infection affects the valves and/or lining of the heart. Antibiotics may be prescribed before dental care and tattoos.
Education is extremely important as your child grows into a teen. Your teen needs to know the type of congenital heart disease they have and the associated treatment for their condition. They need to learn the importance of regular check-ups and care. As the teen ages, they will move from a pediatric heart specialist to an adult specialist where they will need to know about the condition to effectively discuss long-term care options and medical history.
Preparing a Child for Life as an Adult with CHD
It may be hard for parents to think about their child growing up, but when CHD is in the picture, preparation is important. Keep a file of all the tests, test results, medications, medical appointments and other important paperwork associated with the condition.
Other things to take into consideration are long-term care options, medical insurance, and medical care while your child is at college. While some teens can just visit the doctor on campus, your teen cannot. A heart specialist must be located near the college for regular check-ups or regular trips home must be scheduled. If there have been no health problems, the heart specialist may agree to lengthen the time between appointments so the appointments fall during college break schedules. As is the case with all medical care, doctors address care on a patient to patient basis.
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