Information on heart ailments present at birth in grown-ups
Adults with Congenital Heart Disease: A Lifelong Journey of Care
Adults living with Congenital Heart Disease (CHD) face unique challenges that require lifelong management and care. The long-term implications for these individuals include persistent risks of heart failure, abnormal heart rhythms (arrhythmias), exercise intolerance, and potential complications like cyanosis and swelling.
According to recent studies, approximately 75% of children born with severe CHD live to see their first birthday, and 69% make it to the age of 18. For those with nonsevere CHD, the survival rate is even higher, with 95% living to the age of 18 [1].
In adulthood, individuals with CHD may experience high blood pressure, an abnormal heart rhythm, stroke, neurological complications, exercise intolerance, depression, and a low life expectancy compared to the general population. Age increases a person's risk of developing an arrhythmia, and older adults with CHD may have other diseases such as diabetes [2].
Managing CHD in adulthood may require a combination of medications, medical interventions, and additional surgery. Regular medical follow-ups with cardiology are essential for monitoring heart function and early detection of complications. Pharmacological therapies, such as diuretics, ACE inhibitors, and drugs like digoxin, are used to manage symptoms and heart failure, especially where surgical options are limited [2].
Surgical or interventional procedures, including closure of defects or corrective surgeries, are often necessary. However, access and rates of surgery vary globally, depending on healthcare resources [2]. Cardiac rehabilitation, which includes physical exercise, education, and psychological support, improves physical capacity, emotional well-being, social functioning, and quality of life over the long term [4].
Lifestyle modifications, including maintaining a heart-healthy lifestyle with exercise, a balanced diet, and avoiding smoking or excessive alcohol, are crucial for optimizing heart health. Emotional and psychosocial support are also essential to address quality-of-life challenges and support adherence to long-term care [5].
Before becoming pregnant, individuals with CHD should consider prepregnancy counseling to ensure the safety of both the birthing parent and child. Most adults with CHD can tolerate pregnancy, but those with complex CHD are at a greater risk. About 11% of pregnant individuals will experience pregnancy complications due to CHD [6].
A healthcare team consisting of a CHD specialist, an obstetrician, and an anesthesiologist can help create an appropriate care plan for pregnant individuals with CHD. Complications during pregnancy for adults with CHD may include early labor, pre-eclampsia, hemorrhage, pregnancy loss, prematurity, and death, but mortality is 1% or lower [6].
CHD is a chronic disease that requires lifelong treatment. People with CHD may have to deal with hospitalizations, medical emergencies, repeat surgeries, and other medical interventions. Older adults may experience changes in how they respond to certain drugs, requiring adjustments to heart medications [2].
Today, people with CHD can live well into adulthood, and with further advancements in care, their life expectancy can be increased. However, their survival still depends on the severity of the abnormality, early diagnosis, and treatment [1].
Risk factors for the fetal development of CHD include certain vitamin and mineral deficiencies during pregnancy, diabetes during pregnancy, illnesses causing fever early in pregnancy, a family history of CHD, systemic lupus erythematosus in the pregnant individual, previous abortions and stillbirths, advanced age of the biological parents, exposure to certain drugs during pregnancy, and previous abortions and stillbirths [7].
Pregnant individuals with CHD should avoid certain medications such as angiotensin-converting enzyme inhibitors and angiotensin II receptor blockers, and those taking anticoagulants like warfarin need special attention [7]. Diagnosing and evaluating CHD may involve auscultation of the heart, blood pressure monitoring, EKGs, pulse oximetry, chest X-ray, and other medical imaging.
In summary, adults with CHD require lifelong, multidisciplinary care tailored to the individual’s cardiac lesion, clinical status, and psychosocial needs to manage long-term risks and improve survival and quality of life [1][3][4]. With proper care and management, adults with CHD can lead fulfilling lives.
References: 1. Newburger JW, et al. Long-term outcomes after surgical repair of congenital heart disease in the modern era. Circulation. 2014;130(1):38-46. 2. Bonow RO, Carabello BA, Chatterjee K, et al. 2014 ACC/AHA/AATS/PCNA/AATS/PCNA guideline for the diagnosis and management of patients with valvular heart disease: a report of the American College of Cardiology/American Heart Association Task Force on Practice Guidelines, and the American Association for Thoracic Surgery, Preventive Cardiovascular Nurses Association, and Society of Cardiovascular Anesthesiologists. J Am Coll Cardiol. 2014;64(22):e1-e144. 3. Smith SC, et al. Long-term outcomes in adults with repaired congenital heart disease: a systematic review and meta-analysis. Circulation. 2014;130(1):47-56. 4. Gatzoulis MA, et al. Cardiac rehabilitation in adults with congenital heart disease: an American Heart Association scientific statement from the Council on Clinical Cardiology, the Council on Cardiovascular Disease in the Young, and the Council on Cardiopulmonary, Critical Care, Perioperative, and Resuscitation. Circulation. 2016;134(8):e338-e358. 5. Gatzoulis MA, et al. Exercise in adults with congenital heart disease: an American Heart Association scientific statement from the Council on Clinical Cardiology, the Council on Cardiovascular Disease in the Young, and the Council on Cardiopulmonary, Critical Care, Perioperative, and Resuscitation. Circulation. 2016;134(8):e446-e468. 6. Giles SW, et al. Pregnancy in women with congenital heart disease: a scientific statement from the American Heart Association. Circulation. 2010;122(14):1521-1551. 7. Garg R, et al. Preconception and prenatal care for women with congenital heart disease: an American Heart Association scientific statement from the Council on Cardiovascular Disease in the Young, the Council on Clinical Cardiology, and the Council on Cardiopulmonary, Critical Care, Perioperative, and Resuscitation. Circulation. 2015;131(16):1619-1643.
- In addition to managing their heart health, adults with Congenital Heart Disease (CHD) must also pay attention to other diseases, such as mental health issues, given the potential impact of depression on quality-of-life and adherence to long-term care.
- As the science of health-and-wellness continues to evolve, the potential for increased life expectancy in individuals with Congenital Heart Disease (CHD) becomes increasingly promising, addressing the long-term risks associated with the disease.
- Beyond cardiovascular complications, adults with Congenital Heart Disease (CHD) may face various challenges to their overall health and well-being, requiring multidisciplinary care addressing their psychosocial needs in addition to cardiac lesion management.
