Causes

As we age, our hearts naturally lose some of their power to pump and fill properly. Some health conditions may cause this to happen sooner than it should. Let’s explore some of the most common causes of heart failure in children and young adults. 

Congenital Heart Disease

Congenital Heart Disease Resources

Check out our additional resources for children and adults with congenital heart disease below.

Mechanical Circulatory Support (MCS) in ACHD Patients

Ventricular assist devices can help adults with congenital heart disease live longer, healthier, better quality lives.

Considerations for Advanced Heart Failure Consultation in Congenital Heart Disease (CHD) Patients (CHD Referral)

Learn what factors your doctor considers when referring CHD patients for advanced heart failure consultation.

HeartMate 3™ LVAD ACHD Patient Journey

Everyone’s journey will look a little different. Use this map to get a feel for what lies ahead. It will also help you understand when you should be reading and learning about different phases of the journey.

  Scroll down to explore specific types of congenital heart disease.

Fontan Failure 

Fortunately, like with other types of CHD, cardiologists and cardiac surgeons have discovered ways to allow you to survive and thrive throughout childhood with only one ventricle. If you were born with only one ventricle, you likely went through several heart surgeries early in your life and may now have a Fontan circulation. The Fontan circulation is developed when a pediatric cardiac surgeon creates a pathway for blood to return to your lungs for oxygen directly, without circulating through a ventricle. This frees up the one ventricle you have to do the hard work of pumping your blood out to your body. While the Fontan circulation can be very successful, in some cases, the one ventricle will not be able to do all the work of two ventricles and you may experience heart failure. If you have a Fontan circulation and are starting to experience heart failure, you might feel like it’s hard to catch your breath or like your heart is beating in a weird rhythm. Your skin may be more blue-tinted than usual, or you may have swelling in certain areas of your body. Occasionally, because pediatric cardiac surgeons had to make some unnatural changes in your body to create the Fontan circulation, you may develop chronic liver disease, renal insufficiency/failure, and/or problems with your intestines leading to malnutrition.

Play Video

Brooklyn’s Journey

 

If you are a patient and have a Fontan circulation and have symptoms of heart failure that can’t be controlled with medications, you may need a VAD or a transplant. VADs can help as a form of long-term therapy or they can help you survive until it’s time for your transplant. Watch now to see how ACTION is helping patients with a Fontan circulation, like Brooklyn, to live longer and healthier lives. We are actively collaborating, sharing, and innovating to figure out how best to provide life-saving therapies for Fontan patients.

Fontan Circulation Patient Handbook

As someone who was born with a single ventricle heart, you have special health concerns now. This book was written by Cincinnati Children’s Fontan team for patients who had Fontan heart surgery.

Fontan Resources

For more information about Fontan, see the following resources.   

When you are faced with a lifelong heart condition such as congenital heart disease, it can help to connect with others who get what you’re going through. Support groups offer a way to bring people together to share information. This can also help reduce stress and worry and provide helpful education.

Mended Hearts/Mended Little Hearts
mendedhearts.org

Sisters by Heart
sistersbyheart.org

The Adult Congenital Heart Association (ACHA)
achaheart.org

Fontan Failure 

Fortunately, like with other types of CHD, cardiologists and cardiac surgeons have discovered ways to allow you to survive and thrive throughout childhood with only one ventricle. If you were born with only one ventricle, you likely went through several heart surgeries early in your life and may now have a Fontan circulation. The Fontan circulation is developed when a pediatric cardiac surgeon creates a pathway for blood to return to your lungs for oxygen directly, without circulating through a ventricle. This frees up the one ventricle you have to do the hard work of pumping your blood out to your body. While the Fontan circulation can be very successful, in some cases, the one ventricle will not be able to do all the work of two ventricles and you may experience heart failure. If you have a Fontan circulation and are starting to experience heart failure, you might feel like it’s hard to catch your breath or like your heart is beating in a weird rhythm. Your skin may be more blue-tinted than usual, or you may have swelling in certain areas of your body. Occasionally, because pediatric cardiac surgeons had to make some unnatural changes in your body to create the Fontan circulation, you may develop chronic liver disease, renal insufficiency/failure, and/or problems with your intestines leading to malnutrition.

Play Video

Brooklyn’s Journey

 

If you are a patient and have a Fontan circulation and have symptoms of heart failure that can’t be controlled with medications, you may need a VAD or a transplant. VADs can help as a form of long-term therapy or they can help you survive until it’s time for your transplant. Watch now to see how ACTION is helping patients with a Fontan circulation, like Brooklyn, to live longer and healthier lives. We are actively collaborating, sharing, and innovating to figure out how best to provide life-saving therapies for Fontan patients.

Fontan Circulation Patient Handbook

As someone who was born with a single ventricle heart, you have special health concerns now. This book was written by Cincinnati Children’s Fontan team for patients who had Fontan heart surgery.

Fontan Resources

For more information about Fontan, see the following resources.   

When you are faced with a lifelong heart condition such as congenital heart disease, it can help to connect with others who get what you’re going through. Support groups offer a way to bring people together to share information. This can also help reduce stress and worry and provide helpful education.

Mended Hearts/Mended Little Hearts
mendedhearts.org

Sisters by Heart
sistersbyheart.org

The Adult Congenital Heart Association (ACHA)
achaheart.org

Cardiomyopathy

Play Video

 

Tessa’s Journey

Watch what a day in the life is like for 7-year-old HeartWare HVAD patient, Tessa. Tessa has heart failure from cardiomyopathy. Medicines did not work for Tessa, so she received a HeartWare HVAD to help her heart pump blood to her body. This device allows Tessa to wait for her heart transplant. Tessa can play, dance, and go shopping on her VAD!

  Scroll down to explore specific types of Cardiomyopathy.

Cardiotoxicity

Cardiotoxicity is when heart damage is caused by chemicals or medicines, like chemotherapy. When you receive chemotherapy, you are given medicines to kill cancer cells in your body. Sometimes these drugs also hurt the normal cells in and around your heart.

Myocarditis

Myocarditis is when the wall of the heart muscle becomes inflamed, usually due to a viral infection. A severe case can keep your heart from working as it should. 

Myocarditis has many causes:

  • Viruses: Some of these viruses include common colds, including Influenza or Coronavirus.
  • Bacteria: Some of these infections include “staph infections,” “strep infections,” and Lyme disease.
  • Parasites: Some of these include those found in cat poop and insect bites.
  • Fungus: Some of these infections include molds, yeast, and fungi.
  • Allergies: These may be reactions to medications or recreational drugs.
  • Chemicals: This includes reactions to things like radiation, radiotherapy, or other chemicals. 

For more information, see the handout below:

An Introduction to Myocarditis

Muscular Dystrophy

Muscular Dystrophy (MD) is a group of diseases that make muscles become weak over time. If you have MD, it’s likely that you’ll have problems with your heart at some point in your life. In the same way that MD weakens muscles in your body, it can also weaken your heart and lead to cardiomyopathy. This is a condition in which your heart muscle struggles to pump, fill, or beat normally.

Play Video

Christian & Ricky’s Stories

Christian and Ricky have Muscular Dystrophy. Both of their hearts became weakened, and heart medications did not work. They needed something to help them feel better and live longer. They each got a Ventricular Assist Device (VAD) to help their weakened hearts pump blood to their bodies. Watch as Christian and Ricky teach you about their HeartMate 3 VAD.

Resources

For more information about Muscular Dystrophy, check out: 
Parent Project Muscular Dystrophy
parentprojectmd.org

Hypertrophic

Hypertrophic cardiomyopathy is when your heart muscle becomes too thick. This makes it harder for the heart to relax or squeeze properly. The abnormal muscle can sometimes lead to life-threatening abnormal heart rhythms or arrhythmias.

This condition can go undiagnosed because you can often live with it without showing any symptoms.

Cardiotoxicity

Cardiotoxicity is when heart damage is caused by chemicals or medicines, like chemotherapy. When you receive chemotherapy, you are given medicines to kill cancer cells in your body. Sometimes these drugs also hurt the normal cells in and around your heart.

Myocarditis

Myocarditis is when the wall of the heart muscle becomes inflamed, usually due to a viral infection. A severe case can keep your heart from working as it should. 

Myocarditis has many causes:

  • Viruses: Some of these viruses include common colds, including Influenza or Coronavirus.
  • Bacteria: Some of these infections include “staph infections,” “strep infections,” and Lyme disease.
  • Parasites: Some of these include those found in cat poop and insect bites.
  • Fungus: Some of these infections include molds, yeast, and fungi.
  • Allergies: These may be reactions to medications or recreational drugs.
  • Chemicals: This includes reactions to things like radiation, radiotherapy, or other chemicals. 

For more information, see the handout below:

An Introduction to Myocarditis

Muscular Dystrophy

Muscular Dystrophy (MD) is a group of diseases that make muscles become weak over time. If you have MD, it’s likely that you’ll have problems with your heart at some point in your life. In the same way that MD weakens muscles in your body, it can also weaken your heart and lead to cardiomyopathy. This is a condition in which your heart muscle struggles to pump, fill, or beat normally.

Play Video

Christian & Ricky’s Stories

Christian and Ricky have Muscular Dystrophy. Both of their hearts became weakened, and heart medications did not work. They needed something to help them feel better and live longer. They each got a Ventricular Assist Device (VAD) to help their weakened hearts pump blood to their bodies. Watch as Christian and Ricky teach you about their HeartMate 3 VAD.

Resources

For more information about Muscular Dystrophy, check out: 
Parent Project Muscular Dystrophy
parentprojectmd.org

Hypertrophic

Hypertrophic cardiomyopathy is when your heart muscle becomes too thick. This makes it harder for the heart to relax or squeeze properly. The abnormal muscle can sometimes lead to life-threatening abnormal heart rhythms or arrhythmias.

This condition can go undiagnosed because you can often live with it without showing any symptoms.

Other Causes

  Scroll down to explore other causes of heart failure.

Transplant Graft Failure

When you receive a heart transplant, the new donor heart is called a “graft.” Transplanted hearts, or grafts, can develop heart failure over time. This may happen because of coronary artery disease due to chronic or recurrent rejection.

COVID-19

To keep our children and communities safe during the COVID-19 pandemic, it is important to stay informed with updated research and medical insights. 

Here’s what we know: Although more common in adults, children can also get the virus that causes COVID-19. Common symptoms may include fever, cough, runny nose, diarrhea, vomiting, loss of smell, or headache. Most COVID-19 infections in children are mild or get better with medical care.

It’s important for all of us to help prevent the spread of COVID-19, especially among vulnerable child populations. Children and adults can reduce their risk of exposure by wearing a mask in public, social distancing, and washing hands frequently.

Some children and adult patients can experience more serious problems as a result of COVID-19. These include myocarditis or multisystem inflammatory syndrome (MIS-C):

  • Myocarditis: Just like other viruses, COVID-19 can cause myocarditis, a rare inflammation of the heart muscle. Symptoms may include chest pain, irregular heart rate, difficulty breathing, loss of appetite, fatigue, and/or swelling in the legs, feet, or ankles. Most children with myocarditis get better with medical care. Contact your care team if you notice myocarditis symptoms. 
  • Multisystem Inflammatory Syndrome (MIS-C): Research is starting to show that many children with multisystem inflammatory syndrome (MIS-C) also have the virus that causes COVID-19, or had been around someone with COVID-19. MIS-C syndrome typically happens less than 2 weeks after a COVID-19 infection. MIS-C is a rare but more serious complication associated with COVID-19 and can even be lethal. MIS-C can affect different body parts and cause inflammation in the heart, lungs, kidneys, brain, skin, eyes, or gastrointestinal organs. Most children diagnosed with this condition have gotten better with medical care. If your child is showing any emergency warning signs—including trouble breathing, pain or pressure in the chest that does not go away, new confusion, inability to wake up or stay awake, bluish lips or face, or severe abdominal pain, call 911 or go to the emergency room.

Resources

COVID-19 & VADs: How to Stay Healthy in 2021
How to Wear a Mask like a Health Hero

Transplant Graft Failure

When you receive a heart transplant, the new donor heart is called a “graft.” Transplanted hearts, or grafts, can develop heart failure over time. This may happen because of coronary artery disease due to chronic or recurrent rejection.

COVID-19

To keep our children and communities safe during the COVID-19 pandemic, it is important to stay informed with updated research and medical insights. 

Here’s what we know: Although more common in adults, children can also get the virus that causes COVID-19. Common symptoms may include fever, cough, runny nose, diarrhea, vomiting, loss of smell, or headache. Most COVID-19 infections in children are mild or get better with medical care.

It’s important for all of us to help prevent the spread of COVID-19, especially among vulnerable child populations. Children and adults can reduce their risk of exposure by wearing a mask in public, social distancing, and washing hands frequently.

Some children and adult patients can experience more serious problems as a result of COVID-19. These include myocarditis or multisystem inflammatory syndrome (MIS-C):

  • Myocarditis: Just like other viruses, COVID-19 can cause myocarditis, a rare inflammation of the heart muscle. Symptoms may include chest pain, irregular heart rate, difficulty breathing, loss of appetite, fatigue, and/or swelling in the legs, feet, or ankles. Most children with myocarditis get better with medical care. Contact your care team if you notice myocarditis symptoms. 
  • Multisystem Inflammatory Syndrome (MIS-C): Research is starting to show that many children with multisystem inflammatory syndrome (MIS-C) also have the virus that causes COVID-19, or had been around someone with COVID-19. MIS-C syndrome typically happens less than 2 weeks after a COVID-19 infection. MIS-C is a rare but more serious complication associated with COVID-19 and can even be lethal. MIS-C can affect different body parts and cause inflammation in the heart, lungs, kidneys, brain, skin, eyes, or gastrointestinal organs. Most children diagnosed with this condition have gotten better with medical care. If your child is showing any emergency warning signs—including trouble breathing, pain or pressure in the chest that does not go away, new confusion, inability to wake up or stay awake, bluish lips or face, or severe abdominal pain, call 911 or go to the emergency room.

Resources

COVID-19 & VADs: How to Stay Healthy in 2021
How to Wear a Mask like a Health Hero