Congenital heart disease: What to watch for

Living with congenital heart disease (CHD) may mean regular visits to the doctor throughout your life. Your health care might include visits to a cardiologist, cardiology treatments, repeat surgeries or other interventions. It depends on the type of heart defect you have and how complex it is.

Degree	Examples
Simple	Mild pulmonary stenosis
Simple	Repaired ventricular or atrial septal defect
Moderate	Coarctation of the aorta
	Ebstein anomaly
	Milder forms of tetralogy of Fallot
Complex	Any of the single ventricular disorders such as hypoplastic left heart syndrome or tricuspid atresia; likely already managed by a Fontan-type procedure
	Transposition of the great arteries with a Mustard type of repair
	Any type of congenital heart disease that causes cyanosis (not enough oxygen getting to the body's tissues)
	Complex tetralogy of Fallot

Living with CHD can vary greatly from person to person. Some may go years, even decades, before needing any interventions, while others might find themselves frequently visiting hospitals and doctor’s offices. For some, symptoms of their CHD might not appear until adulthood. Understanding what to watch for will help you better manage your CHD, be aware of potential complications and take steps to protect your health.

Symptoms to watch for

The more familiar you are with how your body feels when it is well, the easier it will be to notice when something is off.

Pay attention to yourself when you are feeling well.
Are you short of breath when walking on a flat surface? What about up hills or stairs?
How much exercise can you do before you start to feel tired?
How does your energy level and stamina compare to your peers?

It is important to know that not all the symptoms listed below mean that you are having problems with your heart, but if they persist contact your cardiologist and primary healthcare provider.

General symptoms

increasing tiredness or weakness
decreased appetite or eating less
a stomach that has been feeling uncomfortably fuller and bigger over time
significant weight gain or weight loss over a short period of time
severe nausea or vomiting
change in bowel patterns (diarrhea, constipation)
anxiety or restlessness
palpitations or pounding in the chest that may indicate an abnormal heart beat
bulging neck vessels.

At your next cardiology appointment, ask about your symptoms to watch for and who to call if you notice them.

During physical activity

your usual routine seems more difficult
you have less exercise tolerance
dizziness or faintness
chest pain

At rest

dizziness or faintness
chest pain
gradual difficulty breathing
pale or bluish skin when you are not active

Changes in your heart health can either be subtle or obvious. For example, you might feel more tired over time without noticing, or it can happen suddenly. Heart arrhythmias can cause different reactions in people, some might feel sick to their stomach and vomit, while others just feel tired or no different at all. Anxiety or restlessness can mean many things, including caffeine or a mental health problem, but they can also signal heart problems. Puffiness in your hands, ankles or feet might be due to fluid retention, indicating heart failure or that your heart is not pumping as well as usual. As many people with CHD are now living into older age, they may also experience additional age-related conditions, such as coronary artery disease, cancer and high blood pressure.

It’s important that you don’t ignore subtle changes in the way you feel and how your body reacts to stress and stimuli. Remember that not everything you feel is related to your heart defect. Sometimes you feel tired because you’ve done too much, or your stomach is hurting because you’re sick, just like anyone else. If you have any concerns, speak to your primary healthcare provider or cardiologist.

I know that when I feel short of breath I need to sit down and rest. If I feel dizzy or lightheaded I need to lie down, and if these symptoms persist I should go to the ER and get everything checked out.

Symptoms requiring urgent attention

If you experience any of the following symptoms, don’t wait. Call 9-1-1 or your local hospital emergency department if you develop:

difficulty breathing (panting, gasping, or wheezing)
seizures
persistent dizziness
irregular or rapid heartbeats (palpitations)
fainting
chest pain
lack of urine (which may be a sign of dehydration, poor heart function or poor kidney function)
symptoms of a stroke (numbness, weakness, speech difficulty, lack of coordination)
uncontrolled bleeding (like a bleeding nose that you can’t stop on your own)
ongoing heartburn or shoulder pain
changed level of alertness – confusion, extreme weakness or unresponsiveness

Ask your cardiology clinic for directions on what to do in case of emergency or when needing emergency treatment. You should carry your medical information with you. On the SickKids Hospital website or mobile app, you can create your own MyChart account for secure access to your health record information.

Beat heart disease.

Join the fight to end heart disease and stroke.

Donate

Mental health in CHD

Living with CHD can bring both physical and mental challenges. It’s common to experience anxiety, depression, post-traumatic stress disorder (PTSD) and quality of life issues.

As a young child, you might have faced mental or physical trauma from surgeries or other interventions, which can be very distressing. You may have felt scared or lonely being separated from your family while you were in the hospital. The number of medications you take and frequent doctor visits can also impact your quality of life. FInancial problems, lack of social support, lack of employment opportunities, coping with a new diagnosis, adjusting to a worsening condition or facing end-of-life issues all may contribute to a sense of helplessness.

Mental health is increasingly recognized as an important focus for those living with CHD. Unfortunately, mental health care is underfunded. Psychologists and mental health counsellors outside of hospitals aren’t covered under provincial health care plans and many may not have private health care coverage.

If you wish to speak with a trained counselor, start by asking your cardiologist or primary healthcare provider for a referral. Some adult CHD programs have a psychologist on staff, or can refer you to support outside of the program. It’s encouraged to seek help and support for your mental health, just as you would for your physical health.

If you have mental health problems your doctor should be able to help you find help. You are not alone. Many of us struggle with mental health issues, like anxiety and depression.

CHD and endocarditis

Your CHD may put you at risk for infective endocarditis. Bacteria can destroy heart valves and spread infection to other major organs in the body. The most common source of bacteria is our mouths, especially the teeth and gums. Your dentist should know about your heart defect so they can give you advice on how to maintain good oral hygiene with regular brushing and flossing.

If you previously had endocarditis, have an artificial heart valve or a prosthesis, or have cyanotic disease, you have a higher risk of infective endocarditis than the regular population. You should be prescribed antibiotics before certain types of surgery or other procedures, including dental cleanings and some other dental work. If you aren’t sure if you should take antibiotics, talk to your cardiologist, your dentist or the doctor who will be doing the procedure.

Common symptoms of endocarditis include:

flu-like symptoms, such as fever and chills
aching joints and muscles
fatigue
chest pain when you breathe
night sweats
shortness of breath
swelling in your feet, legs or abdomen

Endocarditis can also cause symptoms that are less common, including:

unexplained weight loss
tenderness under your left rib cage (spleen)
a new or changed heart murmur
blood in your urine
tiny purple or red spots on the skin, whites of your eyes, or inside your mouth
red spots on the soles of your feet or the palms of your hands
red, tender spots under the skin of your fingers or toes

If you have symptoms of endocarditis, see your primary healthcare provider as soon as possible.

CHD and vaccinations

Your primary healthcare provider should also be proactive in keeping you healthy in other ways, such as offering you vaccines to prevent seasonal flu and pneumonia. This is because many people with a chronic disease – especially involving the heart and lungs – are less able to fight infections.

You might be more susceptible to respiratory tract infections. This can lead to serious complications and even death. For example, people with lung congestion and/or low immunity are more likely to develop a bacterial infection that has to be treated with antibiotics. Another example is that people with shunts have increased blood flow in the lungs, which makes them more likely to develop a lung infection.

Your family members can help you by being prepared

Everyone should learn to recognize the signs of an emergency and be able to call 9-1-1, especially caretakers of people with CHD. Empower yourself and encourage others to take a CPR course (cardiopulmonary resuscitation) to be better prepared to act in life-saving ways while waiting for emergency responders.

Your family can also help with your responsibilities while you’re in the hospital, such as caring for dependents and notifying your workplace about your absence.

Be kind to your heart

Healthy heart habits will help protect your heart. Eat a nourishing diet and stick to an exercise routine that has been approved by your cardiology team or healthcare provider. Don’t smoke, abuse drugs or alcohol. If you need advice about diet or exercise, ask your primary healthcare provider for a referral to a dietitian or cardiac rehab.

I experience anxiety and depression and I take my heart health and mental health very seriously. Both are closely linked and equally important.

Keep track of your medical records

Your healthcare providers need to know about your heart’s unique history and anatomy. Your health records belong to you. More health centres and laboratories are now providing their patients with online portals to view their test results and upcoming appointments. Some adult CHD centres provide clinic reports, which list the patient’s complete heart history, and all medical and surgical procedures. Ask your cardiologist and primary care provider if these resources are available to you. If not, ask if your test reports and surgical records can be sent to you.

CHD and developmental delays

Most children with CHD can participate fully at school. But some children with CHD may have delays in development, learning disabilities or special educational needs. These delays may affect them into adulthood and throughout life. If you have complex CHD and have had multiple surgeries or other procedures, you are more likely to have developmental problems.

If you are a parent of a child with CHD, be proactive and work closely with your child's school and doctors to get your child the support they need. If you are an adult with developmental delays, know that you are not alone. Support is available through income and employment support programs.

Key messages

Pay attention to your body and how you feel, so you’ll notice when something isn’t right.

Keep track of your medical records and upcoming appointments.
Ask your cardiologist what symptoms you should watch for.
Use antibiotics and vaccinations to prevent illness if recommended by your cardiologist.
Carry a list of emergency contacts and a health passport wearable equipment (e.g. Medic Alert bracelet).
Be aware of your own or your child’s mental health and/or developmental delays and get help if you need it.

Related information

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

The Canadian Congenital Heart Alliance (CCHA) is a predominant organization in Canada for people with CHD and their families. They offer patient education days and informal opportunities to meet other young people with CHD.
The Adult Congenital Heart Association (ACHA) is a US adult CHD organization.
The University Health Network has an online exercise program for hypertrophic cardiomyopathy patients through step-by-step videos.

Join a Facebook group for online support.

To learn more about CHD, check our other webpages.

This article was written by Shelagh Ross – who lives with congenital heart disease – in collaboration with Barbara Bailey, nurse practitioner at the ACHD program, Peter Munk Cardiac Centre; and Lori Constable-Smolcic, ACHD patient and nurse.