Congenital heart disease care in childhood
Congenital heart disease, also called CHD, means a heart problem that was present at birth. When you were young, your parents or caregivers managed heart care. For example, they:
- Learned about your CHD
- Agreed to any surgeries
- Took you to appointments
- Took care of medicines
When you got older, you might have started to learn about your CHD and how to manage your care. Or, you might just be starting to do this.
Why do I need adult heart care?
When you are under 18, you get heart care from doctors who treat children. When you are an adult, you get care from doctors who treat adults. This includes doctors in the Adult Congenital Heart Program at the OHSU Knight Cardiovascular Institute.
In Oregon, you do not have to switch to adult care at a certain age. But you usually do this around age 18 to 21. You might be excited or a little scared by the change. Your adult heart care team would like to know how you feel so we can help. To us, the change is part of becoming an adult, like going to school or moving to a new home.
How is adult heart care different?
You know more about your own care and how to manage it. This includes:
- Knowing your type of heart disease, any treatments you had and medicines you take
- What symptoms mean you need care right away
- If you need antibiotics before seeing a dentist
- How your heart affects your future health
- That you should see an adult heart doctor who specializes in CHD and have regular appointments
You should also be able to:
- Make appointments and go to them
- Ask your medical team questions
- Take your medicines and refill your own prescriptions
- Make choices about your medical care – You can always ask friends, family and health care providers for their ideas
Talk to your heart care team if you are thinking about:
- Starting a new physical activity
- Getting a tattoo or piercing
- Using alcohol or drugs
- Becoming sexually active
OHSU works as a team
Every week, the heart team from OHSU Doernbecher Children’s Hospital meets with the adult CHD team at the OHSU Knight Cardiovascular Institute to talk about patient care. Our doctors treat both children and adults with CHD. So it is easy for your new adult heart specialists to talk to your childhood doctors. We have the same medical records, and we both want you to live a full, healthy life.
Your parents or other loved ones can be part of your health care, but only if you give permission. When you are an adult, your doctors cannot talk to them without this. Being an adult gives you more privacy.
How do I stay in contact with my heart doctor?
Want to learn more? Check out these websites!
www.iheartchange.org – This is a website especially designed for people like you – teenagers and young adults with CHD transitioning from pediatric to adult health care. If you have a question about living with CHD and getting adult care, this website has useful information. You can meet members of your adult CHD team in the “Welcome to Adult Care” section.
www.achaheart.org – This is the national organization for adults with CHD. You can learn from other adults with CHD around the country.
www.gottransition.org – This website helps young adults and their families switch from pediatric to adult care. The “Youth and Families” section has some great information.
My Knight Cardiovascular story
I was born with congenital heart disease and had multiple surgeries by the time I was three years old. Three decades later, I needed to have my pulmonary valve replaced. It’s a good reminder to get regular cardiac care: Even if you feel fine, the architecture of your heart can be changing.