The Adult Congenital Heart Clinic at the University of Ottawa Heart Institute specializes in the ongoing care and treatment of adult patients with congenital heart defects. The clinic works closely with the Children’s Hospital of Eastern Ontario (CHEO). Several CHEO pediatric specialists are on the clinic staff.
Referrals are accepted from physician’s offices. Helpful background information includes: patient demographics, medical history and physical examination results, test reports (echocardiogram, CXR, TMT, MUGA, MRI), previous heart catheterization, and/or cardiac surgery reports.
Preparing for Your Visit
See Preparing for Your Visit for useful information regarding your visit to the Heart Institute.
Congenital Heart Defects
When a child is born with a heart abnormality, it is known as congenital heart disease. There is a wide spectrum of defects ranging from benign to life threatening. With the advent of pediatric cardiac surgery and improvements in management, most babies born with congenital heart defects now survive to be adults. This is a rapidly growing population with a unique set of challenges for health care workers.
Symptoms related to congenital heart defects will depend on the type of abnormality in the heart. Essentially, there are two main categories of congenital heart defects: cyanotic (blue-tinged skin) and non-cyanotic (pink-tinged skin).
There are several subtypes of congenital abnormalities that can appear in different combinations and thus present various symptoms. Clinical symptoms can include:
- Decreased energy level
- Shortness of breath
- Chest discomfort
Regular follow-up and testing will assist in detecting early changes in cardiac function before changes in symptoms occur.
A cardiologist will carry out a full medical examination, arrange for an electrocardiogram (ECG), a chest X-ray, an echocardiogram, and possibly blood tests. Other tests, including magnetic resonance imaging (MRI), cardiopulmonary treadmill testing (Met Cart), transesophageal echocardiogram, and heart catheterization may be performed. The physician will then be in a position to discuss with the patient what sort of treatment, if any, is required.
Monthly Congenital Heart Rounds
A group of specialists (including adult and pediatric congenital heart specialists) discusses cases (including complex cases) as well as all patients requiring heart catheterization, percutaneous catheter procedure, and/or cardiac surgery. This group of specialists arrives at a consensus regarding the best treatment option to offer the patient.
Due to the wide spectrum of congenital heart defects, treatment is variable and depends on the specific type of abnormality and the degree of dysfunction associated with it. A number of patients are followed at regular intervals and require no intervention. At times, some patients require antibiotic prophylaxis for risk of infection, as with dental work. Others will require procedures via heart catheterization, while some will need to undergo corrective surgery.
Some people may need more than one heart operation. If an artificial valve or synthetic tube is inserted in the heart in childhood, this may need replacing in the future. Regular follow-up is needed, even if the patient has had successful surgery and is leading a normal life. This is because changes may occur within the heart. Details and reports of previous heart catheterizations and/or cardiac surgery are extremely valuable, especially when further intervention is being considered.
Many specialists may be involved in the care of one patient. Nevertheless, it is crucial that all patients have a family physician that has a perspective of the whole person. Comprehensive care of the patient is done collaboratively between specialists and the family physician. Patients who do not have a family physician and who live in Ontario may go to the College of Physicians and Surgeons of Ontario website to find a physician in their area who is actively taking patients. Patients in Ontario without a family physician may call 1-800-445-1822 for assistance. Those patients who live in Quebec should contact their local CLSC.
Meticulous dental hygiene is crucial in patients with congenital heart defects. Many patients are at risk of bacterial endocarditis (infection of the heart). The American Heart Association (AHA) Guidelines for antibiotic prophylaxis and endocarditis prevention are followed worldwide. The following AHA links provide more information:
Despite the fact that a majority of patients with congenital heart defects have undergone previous surgical repair during childhood, many will have ongoing problems as adults. Some may face the prospect of further complications and possibly additional operations.
Patients with congenital heart defects have unique problems that are usually not encountered in the care of adults with cardiovascular diseases. Since parents are the main recipients of information from the pediatric health care team during childhood, most patients with congenital heart defects have a poor understanding about their underlying anatomy and future health issues. Thus, many have assumed poor responsibility for their own care.
Much time is spent educating patients about their heart abnormalities. In view of their relative young ages, many patients need specific counseling regarding reproductive issues, including appropriate contraception and pregnancy risk for the mother and the fetus, exercise limitations, employment, and insurability.
- Canadian Congenital Heart Alliance
- Canadian Adult Congenital Heart Network
- American Heart Association: Adults with Congenital Heart Disease
- Mayo Clinic: Congenital Heart Disease
- Grown Up Congenital Heart Patients Association
- Canadian Marfan Association
- Hypertrophic Cardiomyopathy Association
- Coming for a Clinic Appointment