Children's Heart Failure: An Infographic for Parents & Caregivers​

Heart failure in children can happen because of many health conditions.

Caring for a child with heart failure can be a scary and huge learning curve. Good communication with your cardiology team and learning from research-based resources may help you understand your child’s care routine.

Listen to Jane, mother of a 10-year-old

“It was challenging, to say the least. But, I just learned to accept what it is and how to get through it. Um, this is probably the most difficult part of my entire life, to be honest”

Listen to Jane, mother of a 10-year-old

“It was challenging, to say the least. But, I just learned to accept what it is and how to get through it. Um, this is probably the most difficult part of my entire life, to be honest”

Overview

Children require a certain volume (amount) of blood flowing within their body to develop and grow. Blood plays an important role in delivering oxygen and nutrients, controlling temperature, fighting infections, forming clots to stop bleeding, and removing waste. When not enough blood is pumped forward, these key processes are disrupted.

 

A child’s body will quickly sense and respond when an inadequate amount of blood is moving around their body. Ways their body will respond is by increasing the number of heartbeats (heart rate), preserving and redirecting blood towards their vital organs (e.g., heart, lungs, and brain). A healthy heart muscle can adapt or tolerate the body’s efforts to maintain blood flow, but a weakened heart muscle will struggle to pump blood forward under these conditions.

 

When left untreated for several weeks, the shape and size of the weakened heart muscle will begin to change, becoming thinner and wider. This is when a child may start to show symptoms of heart failure.

 

Several health conditions can cause a child to have a weakened heart squeeze. Examples are listed below under the “Associated Health Conditions” section.

Associated Health Conditions

Several health conditions can cause weakened heart squeeze, resulting in less blood flow to your child’s body and heart failure symptoms in your child. Some examples are:

Other Health Conditions

Other health conditions can place a child at risk for a weak heart squeeze and heart failure symptoms.

 

Some examples are:

Neuromuscular diseases

(skeletal muscle diseases)

  • Duchenne muscular dystrophy
  • Becker’s muscular dystrophy
  • Friedreich’s ataxia
  • Myotonic Dystrophy

Metabolic Diseases

(body’s cells do not use energy, fats or sugars correctly)

  • Mitochondrial Encephalopathy (MELAS)
  • Leigh Syndrome
  • Kearns-Sayre Syndrome

Nutritional Deficits

(lack of vitamins or minerals)

  • Selenium
  • Carnitine
  • Iron
  • Thiamine (B1 vitamin)

Abnormal Heart Beats

(abnormal electrical impulses can cause the heart to beat irregularly and change shape over time)

  • Tachyarrhythmias: fast heart beats from the top or bottom chambers
  • Dyssynchrony: bottom chambers not beating at the same time

Neuromuscular diseases

(skeletal muscle diseases)

Metabolic Diseases

(body’s cells do not use energy, fats or sugars correctly)

Nutritional Deficits

(lack of vitamins or minerals)

Abnormal Heart Beats

(abnormal electrical impulses can cause the heart to beat irregularly and change shape over time)

  • Duchenne muscular dystrophy
  • Becker’s muscular dystrophy
  • Friedreich’s ataxia
  • Myotonic Dystrophy
  • Mitochondrial Encephalopathy (MELAS)
  • Leigh Syndrome
  • Kearns-Sayre Syndrome
  • Selenium
  • Carnitine
  • Iron
  • Thiamine (B1 vitamin)
  • Tachyarrhythmias: fast heart beats from the top or bottom chambers
  • Dyssynchrony: bottom chambers not beating at the same time
Symptoms

There are many symptoms of heart failure, and not every child will show every symptom. Heart failure symptoms in children may be different from adult symptoms.

Small Children & Infants

  • Fast breathing
  • Breathe using tummy or chest muscles
  • Longer feeding times
  • Throwing up or vomiting
  • Excessive sweating while feeding
  • Too tired to finish feeding
  • Eating less overall
  • Poor growth
  • Increased crankiness or irritability
  • Feeling fast heartbeats
  • More sleepy
  • Puffiness (face or belly)
  • Less wet diapers/less pee
  • Fast breathing using tummy or chest muscles
  • Longer feeding times
  • Throwing up or vomiting
  • Excessive sweating while feeding
  • Tires quickly while feeding
  • Eating less overall
  • Poor growth
  • Increased crankiness or irritability
  • Feeling fast heartbeats
  • More sleepy
  • Puffiness (face or belly)
  • Less wet diapers/less pee

School-Aged Children & Teenagers 

  • Fatigue (tiredness)
  • Not able to keep up with friends in gym class or sports
  • Fast breathing
  • Shortness of breath
  • Tummy pain or feeling sick
  • Throwing up
  • Feelings of fast heart beats
  • Dizziness
  • Fainting or passing out
  • Poor appetite
  • Chest pain
  • Puffiness (face, belly or legs)
  • Fatigue (tiredness)
  • Not able to keep up with peers in gym class or sports
  • Fast breathing
  • Shortness of breath
  • Tummy pain or feeling sick
  • Throwing up
  • Feelings of fast heart beats
  • Dizziness
  • Fainting or passing out
  • Poor appetite
  • Chest pain
  • Puffiness (face, belly or legs)
Medications

Medications may be prescribed to a child who has symptoms of heart failure. Sometimes your child’s medications will need to be changed based on their symptoms.

 

Your Cardiologist or Nurse Practitioner can prescribe these medications to your child.

Treatments
Daily Fluid Target
Sometimes children need a prescribed daily fluid target, meaning they will have a set goal of how much they can drink in a day. Fluids are anything your child drinks, such as water, milk, or juice. School-aged and teenagers should avoid energy drinks. Sometimes, solid foods with a higher water content (e.g., watermelon) also need to be given in small amounts because they can also make your child puffy or swollen.
Extra Calories
Children with heart failure typically require extra calories to help them grow. Extra calories can be provided in different ways, other than by mouth. For example, special formulas or adding specific foods higher in calories and fat may be recommended for your child. You will work with the teams dietician to give you information about their diet and help you provide these extra calories to your child if they are needed.
Sometimes children with heart failure have trouble eating all of the calories needed to grow. When this happens, treatments (an nasogastric tube or gastric tube) maybe suggested by your cardiology team to help them get the nutrition they need.
Normal or Low Sodium (Salt) Diet
Normal or low salt diets help lessen your child's puffiness and symptoms. The dietician will provide teaching about how much sodium your child can eat each day and how to read food labels.
Exercise
Having your child participate in less intense exercise is still important to keep a heart healthy lifestyle. You can work with your cardiology health care providers to find creative ways for your child to continue or participate in a new physical activity.
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Daily Fluid Target

Sometimes children need a prescribed daily fluid target, meaning they will have a set goal of how much they can drink in a day. Fluids are anything your child drinks, such as water, milk, or juice. School-aged and teenagers should avoid energy drinks. Some solid foods have a higher water content, which can impact your child’s daily fluid target. The team’s dietician can help you identify those foods and how much to give each day.

Extra Calories

Children with heart failure typically require extra calories to help them grow. Extra calories can be provided in different ways, other than by mouth.

 

For example, special formulas or adding specific foods higher in calories and fat may be recommended for your child.

 

You will work with the teams dietician to give you information about their diet and help you provide these extra calories to your child if they are needed.

Sometimes children with heart failure have trouble eating all of the calories needed to grow. When this happens, treatments (an nasogastric tube or gastric tube) maybe suggested by your cardiology team to help them get the nutrition they need.

Normal or Low Sodium (Salt) Diet

Normal or low salt diets help lessen your child’s puffiness and symptoms. The dietician will provide teaching about how much sodium your child can eat each day and how to read food labels.

Exercise

Having your child participate in less intense exercise is still important to keep a heart healthy lifestyle. You can work with your cardiology health care providers to find creative ways for your child to continue or participate in a new physical activity.

Testing

These are some tests your cardiac health care providers may order for your child. Some of these tests may be needed if your child’s health has changed or are routine testing outlined in care guidelines.

When To Go To The Emergency Department

Please go to the nearest Emergency Department or call 9-1-1 if your child has one or more of these symptoms:

Always let your Emergency Room Doctor know that your child has heart failure symptoms and is followed by a Pediatric Cardiologist.

 

Take any medical information your cardiology team provided about your child’s heart failure and cardiac condition.

Daily Care Tips​
Help your child take their medication on time, every day. Report any missed or late medication doses to your cardiology team.
Keep a record of your child's daily fluids intake. If your child has a fluid limit, staying within those limits will help your child have less symptoms.
A daily schedule can help you organize your day. Especially in the beginning, it is stressful to remember all the new tasks you need to do for your child.
Write down your questions to bring to clinic appointments. Pay close attention to your child's breathing, exercise and activity level so you can recognize if there are changes.
Please try to take your child to have their blood work (or needle poke) within the time frame requested. Having blood work results helps your medical team make decisions about your child’s care or treatments. If your child is afraid of needle pokes, please tell your cardiology team, as there strategies to help your child. There is also a link under the “Useful Resources” tab that can also help.
Let your child’s cardiology team know when you are not able to bring your child to any appointments and if you find it difficult getting to appointments.
Provide your child with foods low in salt. Your health care team can provide you with several ways that keep track of fluids.
If your child has any upcoming procedures for other health conditions (e.g., dental work or surgeries), please inform your child's cardiology team so we can ensure it is safe for your child's heart to undergo these treatments. Children with heart failure need regular activity. If you are unsure if your child can participate in a certain activity or exercise, please call your child's cardiology team for advice.
Inform your child's school or daycare of their heart condition, heart failure symptoms and any medications they need to administer. Education by your cardiology team about symptoms, medications, and when to call you can be provided to ensure your child is safe when you cannot care for them. If you need help, please ask your cardiology team.
It is important that you stay healthy, both mentally and physically. Getting regular exercise, drinking enough fluids each day, taking a break, talking to someone about your feelings or doing self-care activities are all ways to stay healthy. This can be a stressful time for your family, if you need help managing your emotions, please contact your child's cardiology team for suggestions about mental health resources.
Please ask people who are sick to stay home if they want to visit. Children with heart failure can become much sicker than healthy children when they become ill. Good handwashing is also key to staying healthy.
If your family is planning any travel or your child wants to attend any summer camps, let your cardiology team know so they can provide advice on arrangements and additional support.
Children with heart failure need socialization or time with their friends. Being with their peers helps reduce feelings of loneliness and helps their emotions. Socialization should only be limited when other people are sick, or your child is not feeling well. If your child is old enough to spend time alone with their friends, it is recommended that someone else (a friend and parent) knows about their condition and what to do in case of an emergency.
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Listen to Jiahao, father of a 5-year-old

“…making sure to take breaks and then trying not to isolate and avoid friends like even going for a lunch or, you know going for a coffee or just doing something where you can feel like yourself is super important because then you get your energy back.

Listen to Jiahao, father of a 5-year-old

“…making sure to take breaks and then trying not to isolate and avoid friends like even going for a lunch or, you know going for a coffee or just doing something where you can feel like yourself is super important because then you get your energy back.

Care Team

Your child will have many healthcare providers involved in their care. This can seem overwhelming.

The health care providers who have specialized training in caring for child who have symptoms of heart failure work in teams to provide the best care for your child.

A Cardiologist is a doctor with specialized training in the heart. They have taken many years of specialized training in children’s heart health and heart failure. Cardiologists also help develop new ways of caring for children to improve their outcomes by participating in research.

A Nurse Practitioner works alongside your child’s Cardiologist and other team members to provide advanced nursing care. For some appointments, your child may only need to be seen by the Nurse Practitioner as they can assess, diagnose, prescribe, and treat aspects of your child’s heart failure. Nurse Practitioners also participate in research to improve the care of children with heart failure.

A Registered Nurse can provide education about medications, complete health assessments, coordinate care, participate in research and share results about your child’s recent testing. Nurses work with the entire family to optimize your child’s care and help with health concerns.

A Dietician specializes in knowledge related to children’s nutrition and fluid needs. They work with you and your child’s cardiology team to ensure they receive the best nutrition to grow and thrive.

A Social Worker is important in accessing social support in and out of the hospital. They have advanced knowledge in accessing support from your place of work or the government, talking about your emotions, providing support in family meetings, and communicating on your behalf to healthcare providers.

Child Life Specialists help children and their families better understand their health challenges and promote coping using creative ways, like age-appropriate play therapy. They are psychosocial advocates for children and their families and collaborate with your child’s medical team.

Cardiologist

A Cardiologist is a doctor with specialized training in the heart. They have taken many years of specialized training in children’s heart health and heart failure. Cardiologists also help develop new ways of caring for children to improve their outcomes by participating in research.

Nurse Practitioner

A Nurse Practitioner works alongside your child’s Cardiologist and other team members to provide advanced nursing care. For some appointments, your child may only need to be seen by the Nurse Practitioner as they can assess, diagnose, prescribe, and treat aspects of your child’s heart failure. Nurse Practitioners also participate in research to improve the care of children with heart failure.

Dietician

A Dietician specializes in knowledge related to children’s nutrition and fluid needs. They work with you and your child’s cardiology team to ensure they receive the best nutrition to grow and thrive.

Registered Nurse

A Registered Nurse can provide education about medications, complete health assessments, coordinate care, participate in research and share results about your child’s recent testing. Nurses work with the entire family to optimize your child’s care and help with health concerns.

Social Worker

A Social Worker is important in accessing social support in and out of the hospital. They have advanced knowledge in accessing support from your place of work or the government, talking about your emotions, providing support in family meetings, and communicating on your behalf to healthcare providers.

Child Life Specialist

Child Life Specialists help children and their families better understand their health challenges and promote coping using creative ways, like age-appropriate play therapy. They are psychosocial advocates for children and their families and collaborate with your child’s medical team.

If needed, your child’s cardiology team will ask other cardiac specialists to help manage certain aspects of your children’s heart failure, like their heart rhythm (e.g., Electrophysiology Team or Heart Transplant Team).

 

You may be asked about participating in research. It is always your choice to participate and it will not change the care provided to your child if you decide to decline.

Acknowledgements

Thank you to the generous funders and parents whom made this educational tool possible.

Copyright

Created by ECHO in collaboration with ARCHE. Funded by a CIHR grant awarded to ECHO and ARCHE.

 

© ECHO Research and ARCHE, 2023. This resource may not be modified, reproduced or distributed without prior written consent of ECHO Research and ARCHE. Contact shannon.scott@ualberta.ca

Physical treatments can include physiotherapy, prescribed exercise plans, strengthening exercises, massage, and more. 

Psychological treatments can include counselling or talk therapy, supportive therapy, cognitive behaviour therapy, mediation, and more. They can be provided on a one-on-one basis or in a group setting. 

Disclaimer

The information contained in the video/multimedia content (the “Multimedia”) is provided on an “as is” basis and is offered for general information and educational purposes only; it is not offered as and does not constitute professional advice. There is no guarantee about the accuracy, applicability, fitness or completeness of the information found in the Multimedia. This information is provided without warranty of any kind, and the University of Alberta, its agents, employees, and students disclaim responsibility to any party for any loss or damage of any kind that may arise directly or indirectly as a result of the use of or reliance on the information contained in the Multimedia.

These resources may not be modified, reproduced or distributed without prior written consent of ECHO Research. Contact shannon.scott@ualberta.ca.