Congenital heart disease requires lifelong care.

Adults with CHD need care that fits their lives.

Congenital heart diseases (CHD) are heart defects present at birth. These can include a hole in the heart, defective vessels, leaky valves or missing heart chambers.

Success managing these conditions in children means more survive to adulthood. Since many people with CHD believe childhood treatment "cured" them, they don't receive specialized care they should be getting as an adult.

Why does CHD require lifelong, specialized care?

1. CHILDHOOD TREATMENTS

• May be outgrown
• Can lose effectiveness
• Can trigger issues later as an adult

2. NOT TREATED AS A CHILD

• May not have been severe enough to treat but may worsen later in life
• May never have been diagnosed

3. SYMPTOMS MAY APPEAR LATER IN LIFE

• Sudden loss of consciousness
• Abnormal heart rhythms
• Shortness of breath

4. REQUIRES SPECIALISTS FOR UNIQUE CARE NEEDS

• Heart related care: diagnostic evaluation, medical intervention, surgery or transplantation
• Other considerations: pregnancy, genetics, careers, mental health, liver/kidney disease

CHILDREN BORN WITH CHD HAVE A HIGH SURVIVABILITY RATE.

• >85% survive to adulthood
• 40,000 children born with CHD annually (1% of births)
• >1.5 million adults live with CHD (2x as many adults are living with CHD than children)

MANY WITH CHD MAY NOT REALIZE THEY NEED CONTINUED CARE AS ADULTS.

• Half stop treatment by age 13

CHILDHOOD TREATMENTS ARE NOT A CURE.

• 80% don't get recommended adult care

Sources: mayoclinic.org; cdc.org; medscape.org; acc.org; achaheart.org; aacn.org