Patient and Family Education Heart Failure What to Expect at Seattle Children s Hospital This booklet is meant to help you understand heart failure and the care your child receives in the heart failure clinic. We urge you to ask questions at any time.
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Contents What is heart failure?...5 What are the causes of heart failure?...5 Cardiomyopathy...6 Congenital Heart Disease...6 How does the heart work?...7 What are the parts of the heart?...7 What does the right side of the heart do?...8 What does the left side of the heart do?...8 What can I expect in the heart failure clinic?...8 How is heart failure treated?...9 What activities should my child do to stay healthy?... 10 Your child s heart failure team... 10 When should I call the doctor?... 11 Notes... 11 3 of 12
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What is heart failure? Heart failure means that your child s heart is no longer pumping blood as well as it should. This can cause problems and affect your child s entire body. It can also affect physical growth and brain function. What are the symptoms of heart failure in a child? Being very tired/fatigued, even with normal activity Feeling or looking short of breath Not wanting to eat much Stomach pain, bloating or feeling very full Not able to keep food down Vomiting more than 2 times in 24 hours Cough, especially at night Difficulty sleeping or laying flat Swelling around eyes, face or ankles Difficulty learning at school due to being tired Not able to gain weight, or may lose weight What are the symptoms of heart failure in a baby? Not gaining weight Sweating when drinking from a bottle or sleeping Tires easily when drinking from a bottle Not able to finish bottle Coughs, especially when lying down Difficulty breathing or breathing harder and faster Being more irritable What are the causes of heart failure? There are 2 main types of heart conditions in children that may cause heart failure: Problems with the heart muscle (cardiomyopathy) Problems with the structures of the heart (congenital heart disease) In order to treat your child in the right way, your doctor must know what type of heart failure your child has. 5 of 12
Cardiomyopathy Cardiomyopathy means a disease of the heart muscle. Cardiomyopathy is divided into 3 main types: dilated, restrictive and hypertrophic. Dilated cardiomyopathy Dilated cardiomyopathy is the most common form. Dilated means that the heart is enlarged. When this happens, the heart cannot pump blood with as much force as it should. Some known causes of dilated cardiomyopathy include: An infection, such as a virus A gene mutation this may be hereditary (familial), or passed through generations Chemotherapy Most often the cause is unknown. Knowing the cause of dilated cardiomyopathy usually does not change how heart failure is treated. Restrictive Cardiomyopathy Restrictive cardiomyopathy is the least common type. It causes the walls of the heart to become very stiff and rigid (restrictive). This makes the heart unable to fill normally with blood. The low amount of blood in the heart leads to exercise intolerance and heart failure. Most often the cause is unknown. Some known causes of restrictive cardiomyopathy include: A gene mutation may be hereditary (familial) Another disease that affects a number of organs or whole body (systemic) Hypertrophic Cardiomyopathy Hypertrophic Cardiomyopathy causes the walls of the heart to become so thick that it is hard for blood to fill and leave the heart. This causes less blood to be pumped out to the body. Most often the cause is unknown. Some known causes of hypertrophic cardiomyopathy include: A gene mutation - may be hereditary (familial) Metabolic disease Congenital Heart Disease Congenital heart disease means a defect or abnormality in the heart s structure that is present at birth. Many of these structural defects can be repaired surgically. Sometimes, these defects can lead to decreased heart function and heart failure, even after surgical repair. 6 of 12
How does the heart work? The heart is a muscle that works like a pump. When it is working properly, all of the parts work together to pump blood to the body. The heart is divided into a right and left side. The left and right side of the heart are separated by a thick wall called the septum. The septum keeps blood from mixing inside the heart. The entire heart is controlled by its own electrical system. The chambers, valves and electrical system must work well together in order for the heart to pump blood correctly. Aorta Pulmonary artery Pulmonary valve Left atrium Mitral valve Right atrium Tricuspid valve Right ventricle Aortaic valve Left ventricle Properly functioning heart with 4 chambers, 2 on the right, 2 on the left What are the parts of the heart? The heart has 4 parts, called chambers. The right side has an upper and lower chamber. A one-way valve separates these chambers, called the tricuspid valve. The left side has an upper and lower chamber. A one-way valve separates these chambers, called the mitral valve. The upper chambers receive blood. They are called atria. The lower chambers pump blood. They are called the ventricles. 7 of 12
What does the right side of the heart do? The upper-right side, called the right atrium, receives blood from the body. This blood is called oxygen-poor or blue blood because it has very low oxygen levels. The right atrium pumps the blood through the tricuspid valve into the right ventricle. The right ventricle receives deoxygenated ( blue ) blood from the right atrium and pumps it through the pulmonary valve to the lungs. The pulmonary valve opens to the pulmonary artery, the main blood vessel that caries blood from the heart to to the lungs. In the lungs, blood picks up oxygen. What does the left side of the heart do? The upper-left side, called the left atrium, receives the oxygen-rich blood from the lungs. The left atrium pumps the blood through the mitral valve into the left ventricle. The left ventricle receives oxygenated ( red ) blood from the left atrium and pumps it through the aortic valve to the body. The aortic valve opens into the aorta, the main blood vessel that carries blood from the heart to the body. The aorta also supplies blood to the blood vessles in the heart, called the coronary arteries. These blood vessels carry oxygenated blood directly to the heart muscle. What can I expect in the heart failure clinic? While your child is a patient in the Heart Failure Clinic, we will monitor your child s: Symptoms Activity level Performance in school (if applicable) Sleep patterns Eating patterns/diet Blood pressure/ heart rate Height/weight This will tell us how well your child s heart is working. 8 of 12
What tests might my child need? Your doctor will examine your child, use a stethoscope to listen to their heart, and check their breathing and blood pressure. In addition to this, your child may need other tests during their visits. These might include: An echocardiogram, which is an ultrasound of the heart. This test takes 30 to 45 minutes. An electrocardiogram (ECG/EKG), which is a test that measures the heart rate and rhythm. A Chest X-ray to show the heart size and if there is any fluid is in the lungs. Blood tests (labs) to measure how well other organs function. Heart catheterization (heart cath) to measure inside the heart. This provides more information about your child s heart and the heart function. For more information about heart catheterization, visit www.seattlechildrens.org/ clinics-programs/heart/what-to-expect/cardiac-cath/ Exercise tests to check on heart and lung function during exercise. For more information about exercise tests, read our handout Exercise Tests www.seattlechildrens.org/pdf/pe1193.pdf. What should I bring to clinic? Please bring any pertinent family health history to clinic as well as any questions or concerns you may have. Sometimes making a list and bringing it to clinic helps so nothing is forgotten. How is heart failure treated? The goal for treating heart failure is to keep the heart pumping enough blood to the lungs and the body. Heart failure can be treated in several ways: In a few cases, surgery may be an option In most cases, heart failure needs to be treated with medicine and lifestyle change Medicine Give your child medicine as directed. If you have questions about your child s medicines, ask your heart failure nurse. Never stop giving your child a prescribed medicine unless instructed by the doctor. Let us know if your child is not tolerating their medicine. Tell us if your child is vomiting right after taking medication, as you may need to give the medicine again. Do not give your child any over-the-counter medicines because they may have side effects on your child s heart or interfere with the heart medicines. Talk to your child s heart failure team before you give your child anything that was not perscribed by a doctor. Refill your child s prescriptions on time. Plan ahead for refills and give yourself 1 week to order a refill to make sure you get it in time. 9 of 12
What activities should my child do to stay healthy? These guidelines can help your child and their heart stay as healthy as possible: If applicable, make sure that your child attends school. We will work with your child s school staff or nurses if your child has any physical limitations to make sure your child s needs are met. Eat healthy and stay active. A healthy lifestyle is important. Eating a heart healthy diet is strongly encouraged. Too much sodium can cause the body to retain fluid, which can worsen heart failure symptoms. The heart failure team will let you know if there are any activity or dietary restrictions for your child. In some cases, the heart failure team will tell you if your child needs to have any fluid intake restrictions. Too much fluid can make the heart work harder and add strain to the heart, if it is not working well. Routine Medical Care See your child s pediatrician. Maintain regular visits, even when followed closely in the heart failure clinic. Your child s pediatrician will: Give your child immunizations when needed. This includes the flu shot each year. See your child for any routine problems such as a ear infections or colds. Take your child to the dentist. Begin routine dental visits by age 1. Regular check-ups every 6 months. Tell your child s heart failure team before they have any dental work. Your child may need antibiotics before their appointment. Your child s heart failure team Pediatric Cardiologist a doctor specially trained to manage and treat heart problems in babies and children. Directs your child s care and supervises the residents and fellows caring for your child. (In the hospital, sometimes called an attending cardiologist. ) Nurse - the heart failure team has dedicated nursing staff that are trained to help answer your questions in clinic and over the phone. The nurse will also help your pharmacy with refills. The nurse will help teach and reinforce the education you have been given about your child s condition. Fellow licenced doctor who has completed their training in general pediatrics and is further training in pedicatric cardiology. Fellows work closely with the attending cardiologists, especially during evening and weekend hours. Dietician helps ensure that your child gets the nutrition they need for growth and development. Social Worker - a skilled counselor who works with families to prodice emotional support and get them the resources they need. Pharmacist- monitors your child s medicine. Helps create medicine schedules and alerts. 10 of 12
When should I call the doctor? Please call your child s heart failure team if your child has: Trouble breathing or is breathing very fast Swelling, bloating or puffiness (edema) to face, hands and ankles Stomach pain, nausea or vomiting Decrease appetite or inability to tolerate feeds/meals Passes out or turns blue Anything else that concerns you How do I call my child s heart failure team? If you notice any of these symptoms or have other concerns about your child, call: Monday Friday 8 a.m. to 4 p.m.: 206-987-3013 for the heart failure coordinator line Weekends and after hours: 206-987-2000 and ask for the heart transplant or heart failure doctor on-call Tell the heart failure coordinator or heart doctor on call your child s name and that they are a heart failure clinic patient. What should I do if there is an emergency? In an emergency, or for urgent needs or concerns: Call 911 or take your child to the nearest emergency room. If your child is admitted or taken to an outside hospital, please have the provider caring for them contact the heart failure team. Notes 11 of 12
To Learn More Heart Failure Team 206-987-3013 Ask your child s healthcare provider www.seattlechildrens.org Free Interpreter Services In the hospital, ask your child s nurse. From outside the hospital, call the toll-free Family Interpreting Line 1-866-583-1527. Tell the interpreter the name or extension you need. 4800 Sand Point Way NE PO Box 5371 Seattle, WA 98145-5005 206-987-2000 (Voice) 206-987-2280 (TTY) 1-866-987-2000 (Toll-free for business use only) 1-866-583-1527 (Family Interpreting Line) www.seattlechildrens.org Seattle Children s offers interpreter services for Deaf, hard of hearing or non-english speaking patients, family members and legal representatives free of charge. Seattle Children s will make this information available in alternate formats upon request. Call the Family Resource Center at 206-987-2201. This handbook has been reviewed by clinical staff at Seattle Children s. However, your child s needs are unique. Before you act or rely upon this information, please talk with your child s healthcare provider. 2015 Seattle Children s, Seattle, Washington. All rights reserved. 7/15 PE2047