Category: Heart

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​When doctors listen to a child’s heart, what they usually hear is a simple rhythm: “lub-dub, lub-dub, lub-dub…” Sometimes, they’ll hear an extra sound in between the lub and the dub. That extra sound is called a heart murmur.

Although the name is unsettling, heart murmurs are very common in children. Usually, they are normal sounds made as the blood is pumped through the heart chambers, valves and arteries–like a whooshing or swishing noise. Rarely, they may need to be checked by a specialist to rule out any problems.

What kind of murmur is it?

There are two kinds of heart murmurs: innocent murmurs and pathologic murmurs. The doctor will listen to the murmur’s loudness, timing and how long it lasts in the cardiac cycle, ​​which is the end of one heartbeat to the start of the next. Sometimes, it​​ is hard to tell the difference between the two kinds of murmurs just by listening. Some heart abnormalities may not produce a murmur at all. In those cases, an echocardiogram may be helpful.

If your doctor has a question about your child’s heart murmur, they may refer you to a pediatric cardiologist. Pediatric cardiologists have special training to look for heart problems that affect children.

Innocent murmurs (functional murmurs)

Innocent murmurs are harmless, but common. Over two-thirds of school-age children may have an innocent murmur. They may get louder if a child is excited, stressed, or ill. Many disappear as the child grows, although some do last into adulthood. Your doctor can detect these murmurs by simply listening to your child’s heart with a stethoscope.

Children with innocent heart murmurs do not have a related heart problem. They do not need any medical treatment, surgery, sports restrictions, or follow-up with a pediatric cardiologist.

Even when pediatricians believe a child’s murmur is innocent, however, they may still recommend a second opinion from a pediatric cardiologist to be certain. A referral to a pediatric cardiologist does not mean that the murmur is abnormal. Pediatricians are more likely to refer an infant with a heart murmur that occurs during the first six months of life.

Pathologic murmurs

Rarely, a murmur can indicate a problem with the heart. This is called a pathologic murmur. Pathologic murmurs are much rarer and occur in less than 1% of the population. Sometimes, they may be related to congenital heart defect that a baby was born with.

Why does it sound like that?

Pathologic murmurs are usually loud and may include an extra sound called a click, which is heard with a stethoscope.

Causes of pathologic murmurs may include:

• abnormal connections between the right and left heart chambers.
• abnormal connections between the major blood vessels coming from the heart.
• blood that flows through a thickened or leaky heart valve.

Sometimes, the murmur gets louder when the patient changes position, such as standing up. Certain conditions are linked to pathologic murmurs, including:

• Mitral valve prolapse with regurgitation: The mitral valve moves in an abnormal way and leaks.
• Hypertrophic cardiomyopathy: An abnormal thickening of the heart.

Pathologic murmurs often are not life-threatening

While not normal, pathologic murmurs often are not life-threatening. They usually are heard when a child has a minor heart defect. But, if a child has a heart murmur and also develops symptoms such as shortness of breath, trouble eating or gaining weight, sweating while eating, or cyanosis (a blue tint to lips and skin), it could be a more serious condition that needs medical attention right away.

Your child’s pediatric cardiologist may do some testing, using an electrocardiogram and an echocardiogram, to confirm any heart abnormality.

Conditions that may be linked with pathologic heart murmurs

Certain syndromes or genetic conditions may be associated with a cardiac abnormality related to heart murmurs. These include:

• Down syndrome. All children with Down syndrome should have a cardiac evaluation. Many of these patients may have a simple or more complex heart defect.
• Patent ductus arteriosus. Premature infants may have this condition. It occurs when a blood vessel (ductus arteriosus) does not close. This causes blood to circulate abnormally between the two major arteries near the heart. It is often found shortly after birth and can be confirmed by echocardiography.

Do murmurs need treatment?

Innocent murmurs do not require treatment. If your child has a pathologic murmur, your pediatrician and pediatric cardiologist will talk with you about whether treatment is needed. Depending on the type of pathologic murmur your child has, they may need medication and follow-up care, or referral to a pediatric heart surgeon.

Heredity is clearly an important risk factor for conditions such as heart disease, cancer, and diabetes. However, researchers are steadily gathering strong evidence about how diet influence development of diseases. Experts agree that healthy eating habits from an early age can lower the risk of developing several deadly diseases later on. A diet designed to lower the risk of heart disease, diabetes, and other serious diseases is one that benefits the whole family, adults and children alike.

Risk Factors for Heart Disease

Heart disease is the number one killer of men and women in the United States and most industrialized countries. The chief risk factors are:

• Smoking
• High blood pressure
• Diabetes
• High blood level of cholesterol
• Physical inactivity
• Obesity
• Family history of early-onset heart disease

Following a Heart-Healthy Diet From an Early Age

American children and adolescents, on average, eat more saturated fat and have higher blood cholesterol levels than young people their age in most other developed countries. The rate of heart disease tends to keep pace with cholesterol levels. One study found early signs of hardening of the arteries (atherosclerosis) in 7% of children between ages 10 and 15 years, and the rate was twice as high between ages 15 and 20.

According to the American Heart Association, a heart-healthy diet from an early age lowers cholesterol and if followed through adolescence and beyond, should reduce the risk of coronary artery disease in adulthood.

All children older than 2 years should follow a heart-healthy diet, including low-fat dairy products. For children between the ages of 12 months and 2 years with a family history of obesity, abnormal blood fats, or cardiovascular disease, reduced-fat milk should be considered.

Is There a Family History?

When you and your children first saw your pediatrician, you were probably asked if there was a history of heart or vascular disease in your family. If your children were young, their grandparents were probably relatively young as well and may not have had a heart attack or stroke (even though they may have been headed for one). If heart disease in the grandparents becomes apparent later on, be sure to bring it to your pediatrician’s attention at the next checkup.

Cholesterol Testing for Adopted Children 

Complete biological family medical histories are not usually available to adopted children and their parents, even for those adopted in open proceedings. To prevent the development of diseases linked to high blood cholesterol levels, adopted children should be screened periodically for blood lipid (fat) levels throughout childhood.

​​​​A congenital heart defect (CHD) is the most common type of birth defect. It is estimated that 2 to 3 million people in the United States have a CHD.

Over the last few decades, treatments for CHDs have improved—meaning more children born with a CHD are growing up to have children of their own.

If you have a CHD, you might wonder what the risk is for your child to also have a CHD. You might also wonder whether pregnancy will affect your health. These are very important questions to discuss with your congenital cardiologist and perhaps other specialists, such as a maternal-fetal-medicine specialist and a geneticist or genetic counselor.

What causes a congenital heart defect?

CHDs are caused by genetics, the environment, or a combination of both. Some known genetic causes include:

• Chromosome abnormalities: Extra or missing chromosomes.
• Gene mutation: A change to the DNA sequence or order that makes up a gene.

About genetic testing:

There are two types of tests used with genetic testing: chromosomal and DNA. Recent advances in these tests have made it more possible to find the genetic cause of CHDs for many patients. Sometimes, however, a genetic change cannot be identified, but the cause can still be genetic. 

How to reduce your baby’s risk of a congenital heart defect:

If you have a CHD, your baby has a higher risk of being born with a CHD. In fact, there is about a 5% chance your child will have a CHD, too. A geneticist or genetic counselor can help you determine if genetic testing might be helpful for you prior to becoming pregnant.

You might be asking yourself:

• What can I do to lower my baby’s chance of being born with a CHD?
• How might I be able to improve my baby’s outcome if he or she has a CHD? 

These are important questions to ask your medical care team, but some research suggests taking folate prior to conception and during pregnancy may decrease the risk of a CHD.

How a congenital heart defect is diagnosed in an unborn baby:

A CHD can be diagnosed very early in pregnancy (around 18 to 20 weeks) via an ultrasound of the baby’s heart, called a fetal echocardiogram.  

If you have a CHD caused by a genetic change, your maternal-fetal-medicine specialist can perform either an amniocentesis or chorionic villus sampling to determine whether your unborn baby has the same genetic change. Both of these tests are done by inserting a needle into the womb to get a small tissue sample for testing.

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The heart is one of the most active muscles in the body, beating some 50 million times in a child’s first year of life. It’s normal for a child’s heartbeat to speed up or slows down as they play, sleep and grow.

But what if your child’s heartbeat seems faster or slower than it should be, or has an unusual pattern? In this article, the American Academy of Pediatrics describes normal heart rate fluctuations in kids, and what might be cause for concern.

Reasons for irregular heartbe​ats

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Ordinarily, special “pacemaker” cells in the heart send electrical impulses from upper to lower chambers (atria and ventricles), which take turns squeezing and relaxing to pump blood throughout the body. ​There are many factors that can influence this rhythm. These include physical activity, stress or excitement, for example. ​Fever, dehydration, and medical conditions like anemia can also play a role. So can certain medications or consuming energy drinks and other caffeine-containing beverages. In addition, some children are born with congenital conditions that affect the heart’s muscles or electrical pathways and the way it pumps.​

Irregular heartbeats that are usua​​lly normal

Irregular heartbeats, also called arrhythmias, are a common reason for referral to a pediatric cardiologist. Most often, these irregularities turn out to be perfectly normal. Examples of these common but usually harmless arrhythmias include:

Respiratory sinus arrhythmia – the most common irregular heart rate in children. It’s caused by the normal change in how fast blood returns to the heart when they breath in or out. The heart beats faster when they inhale, and slower when they exhale. The name “arrhythmia” is actually misleading, since this variation in heartbeats occurs in all healthy children in varying degrees.

Premature or “skipped” heart beats – seen in up to 75% of pediatric patients. These irregular beats may start in either the top chambers (premature atrial contractions) or the bottom chambers (premature ventricular contractions) of the heart. Patients feel like their heart “skipped” a beat due to a pause in the rhythm followed by a more forceful beat. ​

Normal H​​eart Rate Range for Ch​ildren & Teens​​Variations in a child’s heart rate is normal. Generally, though, a child’s heart rates slows as they get older. For example, a heart rate of 130 to 150 beats per minute is normal for a newborn infant, but it would be considered fast for a school age child. An athletic teenager may have a heart rate of 50 at rest but could have heart rate of 180 during heavy exercise.To check your child’s pulse or heart rate, gently feel for a slight beat inside the wrist, the crook of the elbow, or side of neck. Count beats for 15 seconds, and then multiply by 4.A​ge​Awake Rate(beats per minute)Sleeping(beats per minute)newborn100 to 20590 to 160infant100 to 18090 to 1601- to 2-years old​98 to 14080 to 1203- to 5-years old80 to 12065 to 1006- to 7-years old75 to 11858 to 90Adolescent60 to 10050 to 90

Irregular heart rhythms that may need evaluation & treatment

There are other types of irregular heartbeats that may need be treated or monitored. These include:

Abnormally fast heartbeats

Supraventricular tachycardia (SVT) is the most common abnormal pediatric heart rhythm, affecting as many as 1 in 250 children. It happens when electrical signals in the upper chambers of the heart misfire and cause a sudden burst of abnormally fast, “racing” heartbeats that last for seconds, minutes or longer. About half of children with SVT, sometimes called atrial tachycardia, are diagnosed as infants. Episodes of SVT usually go away by a child’s first birthday, although it can return.

There are different types and causes of SVT, including:

• Wolff-Parkinson-White syndrome affects children born with an extra electrical pathway in the heart. That extra pathway may allow impulses to move in a different direction and faster than usual.

• Atrial flutter & atrial fibrillation happens when electrical signals from the upper chamber of the heart are faster than those in the lower chamber, causing the heart to flutter rather than fully squeezing for a regular beat. Atrial fibrillation is another type of abnormally fast, quivering heart rhythm that is similar to atrial flutter, but the abnormally fast beats are less regular. These conditions make it difficult for the h​eart to pump blood effectively and increases the risk of problems like blood clots. Both are much less common than other types of SVT. Research suggests they may be inherited genetically or linked to congenital heart abnormalities or heart muscle disorders like cardiomyopathy.

Ventricular tachycardia (VT) is a series of heartbeats starting in the lower chambers of the heart, rather than the upper chambers like normal, that cause an abnormally fast rhythm. It is rare in children, but early identification can be lifesaving since it can raise the risk of sudden cardiac arrest. One type of VT is Long QT syndrome, an inherited condition that affects an estimated 1 in 2,500 people. It causes the lower chambers of the heart to take too long to contract and release, causing a fast and chaotic heart rhythm.

Abnormally slow heartbeat

Bradycardia – when the heart rate is below the normal low range for a child’s age. In children, two of the most common types are:

• Sinus bradycardia is seen more often in premature infants. Possible causes include medications the baby was exposed to before birth, breathing problems or a drop in body temperature called hypothermia.
• ​Heart block is when electrical signals are prevented from passing from the upper to lower chambers of the heart. The condition often is caused by structural problems in the heart that affect the atrioventricular (AV) node, a cluster of specialized heart cells in the right atrium that act as a natural “pacemaker.”

Signs & symptoms of an abnormal heart rh​​ythm in children

Infants with abnormal heart rhythms may seem extra irritable or fussy, have feeding difficulties, appear pale, and lack energy. Older children tend to have more specific symptoms such as feeling a fluttering or pounding known as heart palpitations, lightheadedness or fainting, chest pain or discomfort, and difficulty breathing.

How are abnormal heart rhythm​​s diagnosed?

If your child’s doctor suspects a heart rhythm problem after the physical exam, he or she will recommend cardiac testing, which may include:

• Electrocardiogram (ECG or EKG). This fast and simple test usually is the first one recommended to check for abnormal rhythm. It is usually able to confirm a diagnosis, but sometimes additional testing may be needed.
• Wearable heart monitors. If a heart rhythm problem seems to come and go, or happens only in certain settings, a wearable heart monitor may help with diagnosis. Devices such as a Holter monitor let an older child press button when they feel symptoms over the course of a day or more. The doctor can then look at what the monitor showed was happening in the heart at that moment.
• Stress test. If the abnormal heart rhythm tends to happen mostly during exercise, the doctor may order an exercise stress test. Your child rides a stationary bike or runs on a treadmill while the doctor monitors the heart rhythm.
• Tilt-table test. For children with abnormal rhythms linked to fainting, a tilt test can show how heart rate and blood pressure changes when a child goes from lying down to standing up.
• Imaging tests. Although uncommon, certain heart rhythm conditions may signal problems with the heart’s structure. In these cases, imaging tests such as an echocardiogram (ultrasound of the heart) may be needed.

Your pediatrician will likely refer you to a pediatric cardiologist for follow up. A pediatric electrophysiologist, who specializes in testing for heart rhythm disorders, may also be part of your child’s care team.

Treatment for a​rrythmia

Although heart rhythm disorders can be worrisome, treatments and cures are available. Many heart rhythm problems can be controlled with medications. Implantable devices such as artificial pacemakers can also help keep heart rhythms regular. Other options include corrective surgery and other procedures such as radiofrequency ablation, which uses radio waves to heat up certain heart cells in the heart to prevent them from letting electrical currents through.

Healthy teeth and gums are important for everyone―especially for children with heart conditions.

Young children with congenital heart defects (CHD) are at greater risk for tooth decay because their baby teeth may have weak enamel. Children with cyanotic heart disease may have weaker teeth due to poor oxygenation. Cardiac medications that may cause dry mouth can also increase risk for cavities. There are complicated background factors often associated with nutrition, medication, and the demanding situation of these children’s families that all play a part in their dental health.

What’s the connection between your teeth and your heart?

Did you know in the middle of each tooth is a blood vessel? Our teeth and our heart share the same blood―meaning the same bacteria that can lead to cavities in teeth can travel to the heart and cause a dangerous infection called endocarditis. Children with artificial valves or other prosthetic materials and those with cyanosis are especially susceptible.

What is endocarditis?

Endocarditis is an infection that occurs when germs enter the bloodstream and travel to the heart. Certain types of bacteria are the cause in most cases. Although rare, it is a very serious condition requiring hospitalization and long treatment. The best way to reduce the risk of endocarditis is to look after teeth and gums. A healthy mouth and teeth are also thought to protect the body from other illnesses. Endocarditis and other infections can also occur after damage to or cutting the skin, such as having oral piercings, so it is recommended that these are avoided.

What can I do to help protect my child’s health?

Prevention is the best medicine, and there is much you can do to prevent cavities! Daily care and regular dental visits beginning at 12 months of age are the keystones to good oral health.

• Finding a pediatric dentist is the first step. Your child’s cardiologist may have a recommendation for a pediatric dentist who has experience treating children with heart conditions and can tell you whether your child requires antibiotics for routine cleanings or other procedures. You can also ask your child’s cardiologist about any additional considerations for your child’s dental visits, such as the use of sedation or anesthesia.
• Talk with your child’s dentist before the appointment. Discuss your child’s diagnosis and any medications he or she takes. Certain drugs such as aspirin, Warfarin, and other blood thinners may complicate dental treatment. However, dental treatment is safe with the appropriate precautions. Ask your child’s dentist to contact your child’s cardiologist to coordinate care and decide whether your child should have any medication changes before any dental procedure.

Preventing tooth decay starts in the home. Reduce the amount of sugar your child eats and drinks to keep bacteria from starting the decay process. Good oral hygiene, such as regular brushing in the morning and before going to sleep and flossing, are great ways to remove the acid made by the bacteria that causes decay. Your child’s dentist will have suggestions for other ways to keep your child’s teeth healthy.

Having a baby is a special, life-changing experience. But it can also come with unique challenges, especially if your baby was diagnosed with a heart defect before or after birth.

After a heart defect diagnosis, parents and caregivers must learn how to care for a child with special health care needs. This new world of surgeries, procedures, specialists, appointments, and medications can be overwhelming. It is not uncommon for you to experience emotions ranging from sadness, to fear, to guilt and to confusion.

It helps to remember that you are not alone. There are many resources available to help care for a child with a heart defect, from birth to adulthood. Read on to learn more.

Informational resources: becoming an expert and an advocate

Having the right information can help you make the best possible choices about your child’s cardiac care and treatment. Ask questions and learn about your child’s diagnosis, medications and treatment plan.

Tools you can use

• Conquering CHD Guided Questions Tool
• Mended Little Hearts: Empowering Parents to Make Healthcare Choices
• Adult Congenital Heart Association: When Your Child Has a Heart Defect: Planning Ahead for Lifelong Heart Health

Developmental resources: helping your child thrive

Children with heart defects may not meet developmental milestones at the same time or do as well in school as their peers without heart defects. Some may also have to miss school at times for appointments, testing or procedures.

Early intervention can have a significant impact on a child’s ability to learn new skills and overcome challenges. These services and support include special education, speech therapy and physical therapy.

You know your child best. Talk to your healthcare provider if you have concerns about the way your child plays, learns, speaks, acts or moves.

Tools You Can Use

• CDC’s Milestone Tracker App
• Conquering CHD’s School Intervention Series: A Complete Resource Guide
• Mended Little Hearts: Managing Neurodevelopmental Issues

Healthcare resources: plan for your child’s transition to adult care

Teens with heart defects may face unique challenges as they transition from childhood to adulthood. They need to learn new skills, start to gain independence, and interact with the doctor on their own. Eventually, they must prepare to transfer from a pediatric doctor (whom they may have known all their lives) and pediatric health system to an adult doctor and adult health system.

It is especially important for people with heart defects and their families to begin planning for this transition during childhood. This will help them lead healthy and independent lives as adults.

Tools you can use

• Adult Congenital Heart Association: Preparing for College When You Have Congenital Heart Disease
• Adult Congenital Heart Disease Clinic Directory
• Conquering CHD’s Transition Checklist
• Conquering CHD’s Guide to Your Child’s Future Care

Emotional support resources: connecting with others living with heart defects

It is not unusual to feel a sense of isolation when you find out your child or family member has a heart defect. Talking with people who have been through similar experiences may help.

Ask your healthcare provider or social worker to refer you to community support groups or put you in touch with another family that has gone through similar situations. There are also several national organizations that can provide helpful resources for families and caregivers.

Tools you can use

• Congenital Heart Defects Support Network: The American Heart Association and the Children’s Heart Foundation
• Mended Little Hearts: Support for Heart Patients and Their Families
• Conquering CHD: Connecting with Others
• Adult Congenital Heart Association: Heart To Heart Peer Mentors

Remember

Most children with congenital heart defects will go to school, participate in hobbies, sports and other activities in their community. Most of these children will learn and grow much like other kids their age. It is important to remember that people with congenital heart defects continue to require lifelong care from a congenital cardiac specialist to maintain their health and address any issues. For example, you’ll need to work with your child’s health care team to address nutritional needs, exercise​, and cardiac specific risk factors that may change at different points in your child’s life.

Make sure to ask the doctors, nurses, and other medical professionals about your child’s heart defect now, and what to expect in the future. From an early age, encourage your child to ask their pediatric cardiologist​ and other healthcare providers questions as well. This will help your child feel more in control of their health, and that confidence will grow and continue throughout their lives.

What should you expect when you or your child goes to see a pediatric cardiologist?

There are a number of special tests pediatric cardiologists may do to learn more about your child’s heart. Read each section below to learn more about each specific test.

Routine Studies in the Office:

Electrocardiogram

An electrocardiogram (ECG or EKG) is a quick test using stickers on the chest, arms, and legs to measure the electrical activity of the heart. This test is useful for the detection of heart rhythm abnormalities as well as enlargement of the heart chambers.

Echocardiogram

An echocardiogram is an ultrasound movie of the inside the heart―like the ultrasounds done during pregnancy. Images are obtained by placing an ultrasound probe on the chest, the belly, and the neck to see the heart from every angle. A first-time echocardiogram can be lengthy, so be prepared for it to take up to 30-60 minutes. Fortunately, echocardiograms can detect most congenital heart defects or problems of the heart muscle function.

Ambulatory Heart Monitors:

Holter Monitor

A Holter monitor is a small machine that records your child’s heartbeat for a 24-hour to 48-hour period at home. There are 3 to 6 stickers placed on the chest that connect to wires and a small device that can fit in your pocket. If your child has symptoms, such as chest pain or palpitations, your child (or you) can press a button on the device so that your cardiologist can pay extra attention to the heartbeats at the time of the symptoms.

Event Monitor

While similar to the Holter monitor, the Event monitor is different in that it can be worn for one month at home. Just like the Holter monitor, there are up to six stickers placed on the chest. This device records the heartbeats whenever your child has symptoms and presses the button. This test is useful if your child’s symptoms occur less frequently, such as a few times a month.

Ambulatory Blood Pressure Monitor

An ambulatory blood pressure monitor is a type of blood pressure cuff that can be worn at home for 24 hours to measure blood pressure multiple times a day. Every blood pressure is recorded and is shown to your child’s cardiologist when the monitor is returned. This information is helpful to differentiate between a nervous child who has a high blood pressure in the doctor’s office versus a child who truly has high blood pressure.

Further Imaging Studies:

Chest X-rays

The chest X-ray gives the pediatric cardiologist information about your child’s lungs and the heart’s size and shape. The amount of radiation from a chest X-ray is extremely small and doesn’t cause any long-term side effects.

Cardiac MRI

MRI is another way to take pictures of the heart and measure function. It also avoids radiation and uses a painless, giant magnet to take high-resolution pictures of the heart in motion over about 30-60 minutes.

• Children under age 6 often need anesthesia to lay still for up to 1 hour.
• Older children and young adults can typically do the 1-hour test without anesthesia, as they can take a nap or watch a movie while in the scanner.
• Babies in the first couple months of life can do a “feed and wrap” test where they avoid needing anesthesia by falling asleep after being fed and wrapped in a blanket. 
• Patients who have metal in their body, such as dental braces, may not be able to do this test due to the magnet.

Cardiac CT

A cardiac CT (also known as a CAT scan) is a fast, painless imaging study that uses radiation to get detailed pictures of the anatomy of the heart and the surrounding blood vessels. Some CT scans might require contrast or dye given through an IV to so the chambers of the heart and the blood vessels light up. Your child will need to lie very still for a few minutes at a time over a 30-minute period, and younger patients sometimes need to be lightly sedated.

Transesophageal Echocardiogram (TEE)

A TEE is a heart scan with an endoscopy and provides a computerized picture of the heart in action. A small wand is placed inside the esophagus (food pipe) to get a closer look at the heart. This test is usually done before and after open heart surgery, or if certain structures were not seen well on a traditional echocardiogram. Children receive some type of sedation for this test and are not able to eat or drink for up to 8 hours prior the study.

Stress Testing:

Exercise Stress Testing

The exercise stress test involves uses a treadmill or bicycle while being connected to an ECG monitor. The level of difficulty increases every few minutes, and the test stop whenever you get tired. A pediatric cardiologist may recommend this test for schoolage children or young adults if they have chest pain, trouble breathing, or fainting with exercise.

Stress Echocardiogram

An echocardiogram compares the function of the heart at rest versus under stress. It is done immediately after exercising on a treadmill or bicycle. If a child is are unable to exercise, a medication such as dobutamine can be used to create the same effect on the heart as exercise.

Interventional Cardiac Procedures:

Cardiac Catheterization

A catheter or wire is inserted in the blood vessel(s) of the groin and/or neck to reach the heart. This way, the blood pressure and oxygen level of each chamber of the heart can be measured directly and your child’s cardiologist can make decisions about the next best steps in care. It is also possible to do interventions during the catheterization. For example, if a heart valve or a blood vessel is too small, a balloon can be inflated, or a stent can be placed to make that structure bigger. In order to take pictures of the heart during the procedure, contrast or dye may be injected and then a video of your child’s heart in action is taken using a type of x-ray radiation called fluoroscopy. After the catheterization, the small catheter tubes and IV line are removed and a bandage is placed over the area. This procedure may require your child to stay overnight in the hospital for further monitoring.

Electrophysiology Study

For children with arrhythmias or abnormal heart rhythms, an electrophysiology (EP) study can be used to find the area within the heart that is sending the abnormal signals. This test is performed by a pediatric electrophysiologist, a pediatric cardiologist with special training in the electrical conduction system of the heart in children. The EP study is done during a heart catheterization and usually with general anesthesia or sedation. Catheters are inserted into the blood vessel(s) of the groin and/or neck to reach the heart to create an electrical map of the heart. Once the location of the abnormal signal is found, the pediatric electrophysiologist can either burn or freeze the trouble area to get rid of the arrhythmia altogether. An EP study can take from 4 to 6 hours to complete, and your child will may need to stay overnight in the hospital.

​Congenital heart defects are structural problems arising from abnormal formation of the heart or major blood vessels. At least 1% of all live-born infants have a heart defect. The cause of a heart defect is most often unknown. Some defects may be small and may cause your child few problems; others are life-threatening.

Types of Congenital Heart Defects

There are 18 types of congenital heart defects recognized and ​many additional anatomic variations. The more common heart defects are listed below:​

• Atrial Septal Defect (ASD)
• Atrioventricular Canal Defect
• Coarctation of the Aorta (CoA)
• Hypoplastic Left Heart Syndrome (HLHS)
• Pulmonary Atresia
• Pulmonary Stenosis (PS)
• Tetralogy of Fallot
• Total Anomalous Pulmonary Venous Connection (TAPVC)
• Transposition of the Great Arteries
• Tricuspid Atresia
• Truncus Arteriosus
• Ventricular Septal Defect

Outlook for Children Born with a Heart Defect

Even if your baby is born with a heart defect, it is very likely nowadays that he or she can live a normal adult life and overcome the problem. The many advances in the diagnosis and treatment have made it possible to correct defects via surgery and heart catheterization. Even the most difficult cases have hope now.

The ​​diagnosis and treatment for other heart defects will continue to improve ​with new advancements and ​research. ​Talk with your child’s pediatric heart surgeon if you have specific questions about your child’s condition, treatment options, and expected outcomes. 

Many children say their chest hurts at some point during their growth and development. Chest pain​ in children is rarely due to the heart. Still, you should feel free to ask your pediatrician about it to figure out the reason for the pains. Many times, the cause can be determined by answering a few questions about the discomfort and by undergoing a careful physical exam.

What is the most common cause of chest pain in children?

Most children complaining of chest pain have musculoskeletal chest pain, which is pain originating from the muscles or bones in the chest, and their connections. There are three common causes of musculoskeletal chest pain:

• A spasm or cramp of the chest wall muscles and nerves. These come and go and can be quite painful. These pains are sometimes referred to as “precordial catch syndrome”.
• ​Coughing really hard or often during a cold can also cause chest pains.
• “Costochondritis” is pain caused by inflammation of the cartilage connecting with the bones of the chest.

Musculoskeletal chest pain is not due to any problem with the heart and is not dangerous. Pain medicines like ibuprofen can help relieve the pain and reduce any inflammation that is present. Talk to your pediatrician about how to safely use ibuprofen and any other pain medicines.

What else causes chest pain in children?

Other common causes of chest pain include:

• Pneumonia (lung infection) can cause irritation around the lungs that can be quite painful, especially with breathing. This is sometimes called pleurisy.
• Children sometimes describe their breathing difficulties from asthma as chest pain.
• Acid reflux from the stomach up into the esophagus can burn and feel painful. This is called gastroesophageal reflux disease or heart burn.
• Some children describe emotional responses to stress and anxiety as chest “pain”. Others may complain of discomfort to gain attention. Your pediatrician may determine this as the cause of your child’s chest pain by a process of elimination.
• In rare cases, a heart problem will cause chest pain in children.

​Warning signs that should raise concern for a heart problem:​​Chest pain during physical exerti​​on, exercise or activity​Chest pain and pressure that does not go away Chest pain after an unexpected decrease in the ability to exercise over days to weeksChest pain that is followed by passing out or nearly passing outChest pain in children born with heart defects (congenital heart disease)Chest pain in children who have had Kawasaki diseaseChest pain in children who have a genetic cause of high cholesterolChest pain in children with a family member who died of unexplained reasonsChest pain in children with a family member who has cardiomyopathy

​What is a heart attack, and can it happen in a child?

The coronary arteries are tiny arteries that wrap around the heart to bring oxygen to the heart muscle. When these get blocked for any reason, the heart does not get enough oxygen. This is what is commonly referred to as a heart attack.

It is very unusual for a child to have a heart attack, unless they have an abnormal coronary artery course or origin, or disease of the heart muscle. Examples of these include:

• Hypertrophic cardiomyopathy is an abnormality of the heart muscle that makes it very thick. This is present in about 1 out of 200 people. Because of how thick the muscle is, it sometimes needs more oxygen than the coronary arteries are able to provide. Not only does this injure the muscle, but over time, it also puts the heart at risk of an abnormal heart rhythm, which can be life-threatening. Hypertrophic cardiomyopathy is the leading cause of sudden cardiac death in young athletes in the United States.
• About 1 out of 100 people are born with a coronary artery that starts in an unusual place. In rare cases, this abnormality can cause life-threatening symptoms. An abnormal coronary artery is the second most common cause of sudden cardiac death in children in the United States. This is why chest pain that occurs caused by exercise is a red flag.
• Children with a history of congenital heart defects, Kawasaki disease, and genetic causes of high cholesterol are at higher risk than others for having a heart attack from blockage of a coronary artery. Ask your pediatrician if any of these apply to your child.
• Myocarditis happens when the immune system causes damage to the heart muscle. This often occurs while it is fighting an infection by a virus. Myocarditis can be life-threatening and result in poor heart function and abnormal heart rhythms. Fortunately, myocarditis is very rare in children, happening in about 1 out of 100,000 children each year.

Remember

Talk with your pediatrician about any concerns you have about your child’s health.

​​​​The first thing most parents want to know about their unborn baby is whether the baby is healthy. From the moment parents hear the words, “Your child has a heart defect,” they are thrust into a world they were not expecting. 

Even before the child is born, the joy of giving birth is often coupled with so many unique and complicated feelings—ranging from fear, guilt, sadness, shame, and confusion. Many feel ashamed of these feelings and try to suppress them, but it is important to remember these feelings are common and expected.

About Congenital Heart Defects

• Congenital Heart Disease (CHD) is the most common type of birth defect affecting 8 out of every 1,000 newborns. 
• Each year, about 35,000 babies in the Unites States are diagnosed with CHD. Nearly 25% of those are critical congenital heart defects—ones that require surgery or other interventions within the first year of life to survive. Parents of these children often sit by their child’s side in the hospital hoping and praying their child survives.
• As a result of dramatic advances in the medical and surgical management of CHD, 85% of infants with CHD are now expected to survive to adulthood, and CHD is regarded as a chronic disease rather than a terminal one. However, survival rates for children with critical congenital heart defects is lower; they often need specialized medical care throughout their lifetime. 

Understanding Unique Parenting Challenges

All parents are caregivers, but parents of children with CHD have extra challenges.

Learning “normal” and more specialized parenting skills:

• Aside from the typical stresses and adjustments new parents face, in most cases, parents who have a baby with CHD are also struggling to care for a baby who may have spent months in the Neonatal Intensive Care Unit (NICU) and may have tubes or attachments to his or her tiny body.
• When babies have open-heart surgeries, their ability to learn to eat can be compromised. Some babies have to be fed through a feeding tube. In addition to feeding issues, many children with CHD have trouble gaining weight and must go on special high-calorie diets.

Becoming an expert and advocate.

• Knowledge is power. Parents often immerse themselves into learning as much as they possibly can about their child’s diagnosis, medication, and treatment plan. It is important to avoid “internet overload” by sticking to reputable websites. See the additional resources at the end of this article. 

Making changes to safeguard their child’s health:

• Infants and children with CHD have weaker immune systems than the average child. They can end up in the hospital for illnesses that others recover from on their own. Thus, many parents take extra precautions to try to keep their child healthy. This may mean having serious talks with friends and family about getting their annual flu shot and a Tdap shot to prevent whooping cough.
• As their child grows, parents must strike a balance between letting their child live “normally” and protecting them. Walking the line between healthy limits and over-protectiveness is an ongoing concern.

Struggling with the financial component of care:

• For a child with CHD, surgical costs can be astronomical, even with health insurance. The costs of medicines and doctor appointments add up quickly, too. Many children with CHD are on multiple medications, some taken several times a day. It’s not unusual for children who’ve had open-heart surgery to come home on six or more different medications.

Caring for their other children:

• If there are siblings in the family, parents must also take their needs into consideration. Young children, especially, may have fears and anxieties about their brother or sister’s condition that they aren’t voicing. It is important to spend one-on-one time with each child and time together as a family that isn’t focused on the CHD.

Educating the school and others:

• Often, sending a child with CHD to preschool or school, or even having siblings in school, can pose challenges for parents. Again, avoiding major illnesses is a concern. Educating school staff about CHD and their child’s limitations can also be difficult. Sometimes, parents get everyone together who will be working with their child, so that they all understand the condition or defect.

Living with persistent uncertainty:

• Even if their child doesn’t need any more procedures, there will always be doctor appointments that will inevitably dredge up some old memories and new fears. As children grow, it is also natural for parents to feel fear about the inherent risks of CHD and the knowns and unknowns about their child’s lifelong care. The journey is never over, so support plays a big role in these parents’ lives.

Why Support is So Important

Parents need for all kinds of support – informational, emotional, and instrumental – to be able to face the stress of caring for a child with CHD. 

Connecting with other parents of children with a CHD:

• Parents and other family members are encouraged to connect with others who also have a child in their family with a heart defect. Other parents, for example, can provide a credible model of how to cope in a positive way with exceptional life circumstances.

Talking to a trained mental health professional:

• Parents who seek the assistance of mental health professionals typically experience reductions in stress, depression and anxiety, as well as improved sleep and life satisfaction.

The Silver Lining

Life with a child diagnosed with CHD can be overwhelming, stressful, and in some cases tragic. However, some families have recognized a silver lining in having a family member with a complex medical condition like CHD. For example, siblings can be more resilient—demonstrating increased compassion, a greater sense of wonder and joy, and a greater appreciation for life. Many parents’ outlook on life and priorities can change, as well, to appreciate the “little things in life” a lot more.

Additional Resources:

• Little Heart Guide: A Parent and Caregiver’s Guide (Mended Little Hearts) – Guide for families affected by a CHD from diagnosis throughout the lifespan.
• It’s My Heart (Children’s Heart Foundation) – Provides descriptions of the types of CHDs as well as explanations of the various tests, procedures and treatments.
• When Your Child has a Heart Defect: Planning Ahead for Lifelong Heart Health (Adult Congenital Heart Association) – Designed to help parents of children born with CHD plan ahead for lifelong heart health.