Rheumatic Heart Disease in Children & Young People

Key points about rheumatic heart disease

• rheumatic heart disease happens when rheumatic fever causes damage to the heart
• damaged heart valves may leak or become narrow, which affects how well the heart pumps
• tamariki (children) and rangatahi (young people) with rheumatic heart disease need regular check-ups
• some tamariki may need medicine or surgery to help their heart
• ongoing penicillin injections help protect against another episode of rheumatic fever
• getting rheumatic fever again can cause more damage to the heart

What is rheumatic heart disease?

Rheumatic heart disease happens when rheumatic fever damages one or more heart valves. The valves help blood flow in the right direction. When the valves become swollen or scarred, they may not open or close properly. This can make the heart work harder to pump blood around the body.

Some tamariki have mild valve damage and few symptoms. Others have more serious valve problems that need ongoing care or surgery.

Causes of rheumatic heart disease

Rheumatic heart disease starts with rheumatic fever. Rheumatic fever can develop after a strep throat infection that isn’t treated. The infection can trigger inflammation in the body. This inflammation can involve the heart and damage the heart valves. Inflammation can cause permanent scarring and long-term heart problems.

See the rheumatic fever page to learn more.

Rheumatic Fever In Children & Young People

A bit about the heart

The heart has 4 chambers and 4 valves. The chambers fill the heart with blood and the valves help the blood flow in one direction.

The 4 chambers are the:

• right atrium
• right ventricle
• left atrium
• left ventricle

Each atrium connects to its ventricle through a valve. Each ventricle also has a valve at its exit, where blood leaves the heart.

Heart valves open and close as the heart beats. They help blood move in the right direction and stop it from flowing backwards.

How rheumatic fever affects the heart

Rheumatic fever can cause inflammation in the heart tissue and valves. Over time, this inflammation can scar the valves and make the heart beat more slowly. Scarred valves can leak, letting blood flow backward. They can also narrow, which means less blood can flow through.

Not everyone with rheumatic fever will get heart valve damage.

When the valves do not work well, the heart has to work harder. This can cause tiredness, shortness of breath and swelling in the legs.

Symptoms of rheumatic heart disease

When rheumatic fever damages a heart valve, the heart cannot pump properly. Tamariki and rangatahi with rheumatic heart disease may feel:

• a lack of energy
• more short of breath than others when active
• chest discomfort
• short of breath when doing nothing
• breathless when lying flat
• the need for extra pillows to sleep comfortably

Some tamariki do not notice any symptoms at first. Some tamariki only find out they have rheumatic heart disease after a check-up or heart scan.

Check out a series of animated videos about rheumatic fever and the heart.

Rheumatic Fever Animated Videos

Diagnosing rheumatic heart disease

Your child’s health professional will ask about symptoms and examine your child. Some tamariki have a heart murmur, which is an extra sound that can happen when a valve leaks.

Your child may need:

• an ECG - a tracing of the heart’s activity 
• blood tests
• a chest x-ray
• an echocardiogram

An echocardiogram is the main test to help diagnose rheumatic heart disease. An echocardiogram is an ultrasound scan of the heart. It shows how the valves open and close and how well the heart pumps.

Managing rheumatic heart disease

Regular check ups

Your child will need regular check-ups with their healthcare team. These visits help track how their heart is working and pick up any changes early. Your child will also have regular heart scans to check their valves and see how well the heart pumps.

Regular penicillin injections

Penicillin injections every 28 days protect your child from getting rheumatic fever again. Preventing another strep infection is key to protecting their heart from more damage.

Penicillin Injections After Rheumatic Fever

Medicine

Some tamariki need medicine to help the heart pump more strongly or to reduce fluid buildup. Your child’s healthcare team will explain what each medicine does and how it helps their heart.

Surgery

A small number of tamariki have severe valve damage. If the valves don’t work well, your child may need surgery to repair or replace them. 

Looking after your child with rheumatic heart disease

Daily routines and rest

Your child may get tired more easily, so encourage a balance of activity and rest. Support them to take breaks when they need to. Your child’s healthcare team will give you advice about this. 

Taking medicines

If your child needs medicines for their heart, make sure they take them exactly as prescribed. Help them stick to a routine. You can set reminders on your phone. Talk openly about how the medicines help protect your child’s heart.

Staying active

Gentle activity helps most tamariki feel better and stay strong. Your child’s healthcare team will let you know what level of activity is safe.

Healthy eating

Offer a healthy balanced diet with a range of foods. Good nutrition supports energy levels and overall health.

Healthy Eating For Children & Young People

Warm, dry, healthy housing

A warm, dry home helps protect your child from illness and supports their overall health. Good ventilation, insulation, heating and reducing dampness all help keep the home healthy.

Keeping Your Home Warm & Dry

Dental care

Good dental care is important to protect the heart. Sometimes germs from the mouth can enter the bloodstream during dental work. This can cause endocarditis, which is an infection in the heart valves.

Support your child to:

• use their own toothbrush
• brush twice a day with fluoride toothpaste
• reduce sweet food and drinks
• have regular dental checks

Let health professionals know

When to get medical help for your child

See a health professional

See a health professional if your child:

• has a sore throat 
• becomes unusually tired
• develops joint pain or swelling
• is limping
• gets swelling in their legs
• feels breathless
• misses a penicillin injection

See a health professional urgently

See a health professional urgently if your child:

• has chest discomfort
• feels faint or dizzy
• becomes more breathless than usual
• develops a fast or irregular heartbeat

Call 111

Call 111 and ask for urgent medical help if your child:

• has severe trouble breathing
• becomes very unwell 
• is hard to wake
• has sudden severe chest pain

More information