Congenital heart disease

Success managing these condition in children means more survive to adulthood. Since many people with CHD believe childhood treatment ‘cured’ them, they don’t need to receive specialised care they should be getting as an adult.

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.

CHILDREN BORN WITH CHD HAVE A HIGH SURVIVABILITY RATE.

• 40,000 children born with CHD annually (1% of births)
• 85% survive to adulthood
• 1.4 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. CHILDHOOD TREATMENTS ARE NOT A CURE.

• 50% stop treatment by age 13
• 80% don’t get recommended adult care

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