Living with congenital heart disease

It is very important for people born with a congenital heart defect to transition from the hospital where they were treated as a child to one of the 15 adult CHD hospitals across Canada.

Most children born with congenital heart disease (CHD) live well into adulthood – including people with complex heart conditions. Many feel well and are able to continue their educations, build careers and start families.

Some of the children in this group make the transition from pediatric health care to adult health care. But most people with CHD do not transition to adult CHD care until they run into serious problems with their heart, when repairs and interventions are far more risky. This may be because they don’t understand the importance of follow-up care, are unable to find an adult CHD specialist or don’t want to think about their heart issues.

And the story doesn’t improve as CHD children grow up. Less than one-quarter of adults with CHD are currently seeing experts in treating adults with CHD. The others are considered to be “lost to follow-up” and have a higher risk of complications and even premature death. That is why it is so important for you to transition to adult health care.

What is transition?

Transition is a process that begins when you are a young teenager and continues through early adulthood. During this time, you begin to take more responsibility for your own health care. Your healthcare team may talk to you about transitioning to adult care. If not, ask them about next steps and what you need to do to prepare. The transfer from a pediatric care provider to an adult congenital cardiologist will likely happen before you turn 18.

The transition years

Your CHD was probably diagnosed when you were still a baby or small child (or maybe even before you were born). Over the years, your parents, guardians or other adults were responsible for your health care. As you grew up, you became more independent in all areas of life – perhaps learning to drive, choosing your own friends and activities and deciding what type of education and career were right for you. Managing your health is another important area of life where you need to take charge.

Your healthcare team will try to make your move from the pediatric setting to the adult care setting as smooth as possible. As part of the transition, you will learn:

• about your particular heart defect
• how to manage your heart defect
• how to make sure you get the health care you need.
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You may have access to websites, videos, webinars, books and pamphlets about your heart condition, and how to become more independent. Look at the iheartchange website for tools and resources to support you through the transition process.

Simple congenital heart defects

If your heart defect is mild (simple), you might be referred to a cardiologist who will see you in a private office instead of a hospital clinic. Cardiologists who work outside of special CHD programs may be called “general cardiologists” or “community cardiologists”. Not every community has a cardiologist, so you may have to travel to another community. The referral will be based on the type of heart defect you have and your overall health. Your parents may still go to appointments with you, but you will be in charge of your care.

Moderate / complex heart defects

If your heart defect is classified as moderate or complex, you should ask to be referred to an adult CHD centre.

Adult CHD centres in Canada

In Canada, there are 15 adult CHD centres, each within a hospital setting in major cities across Canada. Each has a specially trained cardiology team. The team may include:

• adult and pediatric cardiologists
• heart surgeons
• registered nurses
• nurse practitioners
• psychologist
• genetic counsellor
• social worker

Additional specialists are available if and when you need them.

Why it is important to stay in care

Seeing your cardiology team regularly is very important in order to stay healthy. This is true even if you feel 100% fine with no symptoms. Adults with CHD who are seen by a CHD cardiology team are more likely to get the right treatment and less likely to develop urgent medical problems than those who are not.

If you have moderate or complex CHD, one of the most important things you can do to keep your heart healthy is to be seen by your adult CHD cardiology team throughout your life. They will be better able to recognize and treat problems with your heart than a general practitioner or community cardiologist. Adult CHD patients are at higher risk than most people for heart rhythm problems and heart failure. They are more likely to need further surgeries and treatments. Your adult CHD cardiology team will continue to manage these issues throughout your life to try to keep you as healthy as possible.

How often do you need to be seen?

On average, patients are seen once a year. Your cardiologist will tell you how often you need to be seen based on your heart defect and overall health. Usually your next appointment is booked at the end of each clinic visit. Some hospitals have online patient sites where you can log in to keep track of your appointments, and choose to get email reminders.

Steps you can take to make a successful transition

Choose a primary healthcare provider 

When you start to live independently, you may choose a different primary healthcare provider than the one your parents see. A primary healthcare provider can be a family doctor, nurse or nurse practitioner in your community, depending on where you live. 

A primary healthcare provider can take care of all of your general health needs as well as help you get the care you need to manage your heart problems. They will know about programs and services that can support you. They will also be responsible for referring you to healthcare specialists and coordinating your care. 

When choosing a primary healthcare provider, ask if they are comfortable treating someone with CHD. They should be willing to contact your cardiologist if either of you have questions or concerns.

Keep a record of your own medical information 

• name and contact information of your cardiologist and family doctor
• type of heart defect you have
• when you were diagnosed
• whether your heart defect has a specific cause
• any other health problems you have
• treatments you have had (surgeries, catheterization, heart valve replacement, ablation, etc)
• your medications
• medications you should not take and why
• if you need to take antibiotics before the dentist or other medical procedures
• signs or symptoms that mean you need urgent medical care
• tests or procedures you might need in the future
• activities you shouldn’t take part in

On the Sick Kids Hospital website, you can create your own wallet-sized MyHealthPassport with your medical information. 

Another excellent way to keep this information handy is to wear a Medic Alert bracelet or necklace. It lists your main medical issues and includes a number to call for complete information and contacts. It can help save your life if you are in an emergency situation. It can also give peace of mind to your loved ones, knowing that your health information can be accessed quickly if it is needed in an emergency.

Don’t stop asking questions 

As you become more involved in managing your own health care, you will have lots of questions. Ask your healthcare providers to set aside some time to talk about your concerns.

Advocating for your rights

Making the transition to adult care involves taking on more responsibility for your own health care. Being a little nervous or anxious about these changes is normal. No one expects you to be an expert on your heart, but you will need to know enough about your condition to share information with those who may know less. That includes emergency responders and other healthcare providers. It’s in your best interests to be as well informed as possible. 

You have the right to be involved in decisions that affect you and your health. This may feel awkward at first, especially if your parents made all the decisions for you in the past. Ask questions. Learn about your condition. Remember – you have the time and the information you need to make important health decisions for yourself. 

Feelings – what to watch for

Transitioning to adult care can be a stressful process for some people. You are leaving behind a familiar hospital to start again somewhere new. You are saying goodbye to the healthcare team that has supported you all of your life. That can be hard, but it can also be exciting. You are entering a new phase of your life.

It is important to know that you aren’t alone. Here in Canada there are close to 100,000 adults with CHD – more adults than children! Many have complex heart defects and face lifelong challenges. Your new healthcare team is experienced in caring for people like you. 

It is normal to feel a bit nervous at times. It is also understandable if people with CHD sometimes experience a low mood, have concerns about living with a lifelong illness, feel uncertain about the future or feel different from other people. It is important to be able to talk about your feelings with people you trust. If you wish to speak with a trained counselor, ask your cardiologist and/or primary healthcare provider for a referral. Just talking and sharing can make a big difference to how you feel.

Key messages

• Most children born with CHD live well into adulthood.
• Transition is the process of developing the knowledge and skills to manage your condition (with your healthcare team), as you move from the pediatric to the adult healthcare setting.
• People with moderate or complex CHD should be seen by an adult CHD specialist at one of 15 specialty clinics across Canada.
• People with mild heart defects are referred to a community cardiologist.
• Carry a health passport or wear a Medic Alert bracelet or necklace in case of emergency.
• Be involved in your health care. Learn about your condition. Prepare your questions before medical appointments.  
• Take care of your mental health needs.

Related information

Stay informed and connected to other people with congenital heart disease.

• The Canadian Congenital Heart Alliance (CCHA) is for people with CHD and their families. They offer patient education days and informal opportunities to meet other young people with CHD. Watch their video about the need for improved resources and care for adult patients.
• The Adult Congenital Heart Association (ACHA) is a US adult CHD organisation.
• The Beat Retreat Camp for Adults with CHD (18+) is an adult camp in Canada.
• Children’s CHD camp in Canada include Camp Oki (Ontario), Camp Braveheart (at Brigadoon Village, Nova Scotia), LIttle Heart Heroes (Alberta) and Children’s Heart Network summer camps (two locations in British Columbia).
• Camp Odayin is a children’s CHD camp in the US.
• The University Health Network has an online exercise program for hypertrophic cardiomyopathy patients through step-by-step videos.

Learn more about transitioning to adult care at other informative Canadian websites.

• iheartchange
• BC Children’s Hospital
• Got transition
• Well on Your Way

Join a Facebook group for online support.

• Heart & Stroke Community of survivors
• Tetralogy of Fallot adult community
• Zipper sisters: Women with CHD
• Congenital heart defects awareness 

To learn more about CHD, check our other webpages. 

• Heart valve disease
• Heart valve surgery
• CHD: Working with healthcare providers
• CHD and birth control
• CHD and pregancy
• CHD: What to watch for
• CHD transition tip sheet (PDF)  

This information was written by Shelagh Ross – who lives with congenital heart disease – in collaboration with cardiologist Lorna Swan, ACHD program, Peter Munk Cardiac Centre and University of Toronto; Pamela Heggie, RN, Mazankowski Heart Institute, University of Alberta Hospital; pediatric cardiologist Andrew Mackie, Stollery Children’s Hospital, University of Alberta; and Adrienne Kovacs, PhD, clinical psychologist, Oregon Health & Science University.