CHD — the plain-language one-pager.

What are Congenital Heart Defects?Diagnosis

Congenital Heart Defects (CHDs) are heart structure problems present from birth — septal defects, valve abnormalities, single ventricle, transposition, tetralogy of Fallot, coarctation, and many more. Modern surgery means most CHD patients now reach adulthood — and the population of Adult Congenital Heart Disease (ACHD) patients is the fastest-growing group in cardiology. ACHD care is its own specialty: the unrepaired defect is rarely the issue — it is the repaired heart living for decades that needs lifelong monitoring.

• The CHD spectrum — from small atrial septal defects (often closed in childhood) to single-ventricle physiology (Fontan circulation) to repaired tetralogy of Fallot. Each defect carries its own long-term risks: arrhythmia, heart failure, valve dysfunction, pulmonary hypertension, endocarditis.
• Adult Congenital Heart Disease (ACHD) — most adults with CHD now live into their 60s, 70s, and beyond. They need lifelong specialist follow-up — not at a regular cardiology clinic, but at an ACHD-accredited center.
• Pregnancy and CHD — maternal CHD is one of the highest-risk pregnancies. A pre-conception cardiology consultation is essential. Some lesions tolerate pregnancy well; others do not. Genetic counseling matters too — recurrence risk for children varies.
• Endocarditis prophylaxis + dental hygiene — many CHD patients need antibiotic prophylaxis before dental work. Know your category.

Find an ACHD-accredited center — and stay engaged for lifeKnow your plan

The single biggest gap in adult congenital care is loss to follow-up. Patients who feel well after pediatric surgery often disengage in their 20s and re-present in their 40s with arrhythmia, heart failure, or sudden cardiac arrest. The repaired CHD heart needs lifelong care — at a center that specializes in adults with CHD.

• Find an ACHD-accredited program — Adult Congenital Heart Association (ACHA) maintains the U.S. center list. Get a baseline assessment regardless of how well you feel.
• Carry your CHD passport — diagnosis, surgical history, current imaging, current meds, prophylaxis category. Bring it to every visit and ED encounter.
• Cardiac MRI is the imaging workhorse for ACHD — many centers use it as routine surveillance.
• Pre-conception counseling for any CHD patient considering pregnancy.
• Family screening — genetic counseling for recurrent CHD-associated syndromes (DiGeorge / 22q11, Marfan, Noonan, Williams, Down syndrome).

Your daily Force FieldLive It

• Follow up at an ACHD-accredited center on schedule — every 1-2 years even when feeling well; more often after surgery or for high-complexity lesions.
• Take all your meds daily — anticoagulants (Fontan, mechanical valves), heart failure GDMT, antiarrhythmics if prescribed.
• Endocarditis prophylaxis if your category requires it — antibiotic before high-risk dental and surgical procedures. Carry the dental card.
• Excellent dental hygiene — twice-yearly cleanings; treat gum disease aggressively.
• Stay active within your prescription — most ACHD patients can and should exercise; some lesions need limits. Cardiac rehab post-procedure is great.
• Vaccines up to date — flu, COVID, pneumococcal, RSV when eligible.
• No tobacco; limit alcohol; treat sleep apnea.
• Pre-conception counseling if you are considering pregnancy. Inform every new clinician about your CHD.

Red flags — call nowAction

• Call your clinic the same day for: new chest discomfort with exertion that goes away with rest (stable angina worth evaluating); a missed dose of antiplatelet or statin; medication side effects (muscle aches, bleeding, GI symptoms).
• Bring up at next visit: any change in exercise tolerance, lipid follow-up timing, BP log review, smoking-cessation support, depression screening, sleep concerns.