Challenges Faced by Parents of Children with Congenital Heart Disease

Challenges Faced by Parents of Children with Congenital Heart Disease

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. See How to Cocoon a Newborn: Only an E-Mail Away! for more information and tips.
  • 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 information regarding congenital heart defects and lifelong cardiac care is available at the Congenital Heart Public Health Consortium (CHPHC) website, www.chphc.org. The CHPHC is housed at the American Academy of Pediatrics through a grant from the Centers for Disease Control and Prevention in an effort to utilize public health principles to affect change for those whose lives are impacted by CHD. Organizational members of the Consortium represent the voice of providers, patients, families, clinicians and researchers.

Last Updated 5/19/2016

Cardiac Conditions in Teens

Cardiac Conditions in Teens

Teenagers frequently experience chest pain. Rarely, though, is the symptom related to the heart. Nevertheless, such complaints should be brought to the attention of your pediatrician, who will diagnose the problem through process of elimination.

“Usually, just asking the patient questions points us to the source of the pain,” says Dr. Reginald L. Washington, a pediatric cardiologist from Denver. Among the red flags he looks for are chest pain upon physical exertion and chest pain accompanied by dizziness. “Those situations would warrant further evaluation,” he says, “but most of the time the cause turns out to be anxiety, too much caffeine, asthma, muscle strain or costochondritis.” The latter condition, an inflammation of the chest wall, is treated with rest, over-the counter anti-inflammatory medications and heat.

High Blood Pressure (Hypertension) and High Blood Cholesterol (Hypercholesteremia)

Doctors once believed that virtually all high blood pressure in youngsters was a complication of another medical condition, such as kidney disease. We now know that even infants can develop primary hypertension, also referred to as essential hypertension. Abnormally elevated levels of the fatlike substance cholesterol in the circulation are also sometimes seen in teenagers. Either problem can pave the way for a future heart attack, cerebral stroke, renal failure, or blindness, among other conditions.

Symptoms that Suggest Primary Hypertension or Hypercholesteremia Include:

  • Dizziness and/or headache from high blood pressure
  • High cholesterol does not cause symptoms in teenagers

How Hypertension and Hypercholesteremia are Diagnosed

Diagnostic measures include physical examination and thorough medical history, plus one or more of the following procedures: (1) multiple blood pressure readings (2) cholesterol blood test.

In teenagers, an abnormally high blood-pressure measurement calls for a second reading, then several additional readings over the course of other office visits before a definitive diagnosis is made. The first number represents the systolic pressure: the peak pressure within the blood vessels when the heart contracts. The second number expresses the diastolic blood pressure reached when the heart relaxes between beats. If the blood pressure remains elevated, more extensive laboratory tests would be  ordered, along with an electrocardiogram (EKG).

Memo to Mom and Dad: Stress can contribute to hypertension. As parents of a teenager, have you had your blood pressure taken lately?

How Hypertension and Hypercholesteremia are Treated

Improved diet and exercise: Both hypertension and hypercholesteremia are uncommon among teenagers. Often, studying the family tree reveals a genetic thread entwined throughout its branches. About half of all youngsters diagnosed with hypertension and two-thirds of those with high cholesterol have a hereditary predisposition to the disorder. “The rest of the cases are due to poor dietary practices and a lack of physical activity,” says Dr. Washington. “In general, those are the easiest to treat. If they learn to eat healthily and engage in aerobic exercise, almost all of them can get their blood pressure and cholesterol down into a normal range.” Even if your youngster’s blood pressure and cholesterol level are normal, we advise following the sensible eating plan. Getting into the habit of choosing foods that are low in saturated fat, cholesterol and salt may help prevent cardiovascular disease later in life.

Drug therapy: Adolescents who fall into the high-risk categories for hypertension or hypercholesteremia may require medication in addition to modifying their diet and lifestyle. Agents typically used to bring down the concentration of cholesterol in the blood include cholestyramine, clofibrate and statins.

To lower blood pressure, a pediatrician might prescribe a diuretic in combination with an agent from one of four families: beta-blockers, angiotensinconverting-enzyme inhibitors or ACE inhibitors; calcium-channel blockers; and alpha-beta blockers. Diuretics, also known as “water pills,” act on the kidneys to flush excess water and sodium (salt) from the body. The other medications reduce blood pressure through various mechanisms.

Helping Teenagers to Help Themselves

Youngsters with or without hypertension or hypercholesteremia should be encouraged to:

    • Maintain a healthy weight.
    • Engage in aerobic exercise for at least thirty minutes per day.
    • Abstain from using tobacco or alcohol.
    • Learn techniques for relieving stress, be it exercise, deep breathing or meditation.
    • Consult the pediatrician if considering taking birth-control pills. Although neither condition is common in healthy teens, oral contraceptives can worsen both high blood pressure and high blood cholesterol.

Mitral Valve Prolapse (MVP)

Four flap like valves regulate the flow of blood through the heart’s four chambers. The mitral valve is situated in the left side of the heart, the side that receives freshly oxygenated blood from the lung, then pumps it out to the circulation. Under normal circumstances, the valve opens to let blood pass from the upper left chamber (the left atrium) into the lower left chamber (the left ventricle). Approximately one in eight otherwise healthy adolescents and young adults are found to have mitral valve prolapse. For reasons that remain unclear, one or both flippers billows out (prolapses) into the upper chamber instead of snapping shut. This can produce a clicking sound, audible through the pediatrician’s stethoscope. Occasionally, blood may leak backward into the atrium, causing a murmur.  “The sounds usually come and go,” says Dr. Washington. Some youngsters with mitral valve prolapse have both a click and a murmur, while others have no abnormal heart noises at all.

Symptoms that Suggest Mitral Valve Prolapse May Include:

  • Abnormal heart murmur
  • Fluttering sensation in the chest, as if the heart were racing or skipping a beat
  • Shortness of breath
  • Headache
  • Sharp, fleeting chest pain

Nineteen out of twenty people with mitral valve prolapse do not exhibit any symptoms; the condition is discovered during a routine physical.

How Mitral Valve Prolapse is Diagnosed

Physical examination and thorough medical history, plus one or more of the following procedures:

  • Stethoscopic exam
  • echocardiogram
  • chest X ray

How Mitral Valve Prolapse is Treated

“The vast majority of people with mitral valve prolapse can go about their lives without having to worry about the condition or restrict athletic activities,” explains Dr. Washington. Under certain circumstances, however, a leaky mitral valve can become infected. To reduce the risk of endocarditis, rare though it may be, the current recommendation is for antibiotics to be taken just prior to dental appointments and surgical procedures.

Helping Teenagers to Help Themselves

Reducing caffeine consumption can help alleviate heart palpitations. Remember that caffeine is present not only in coffee but in soda, chocolate and tea.

Heart Murmur: Language of the Heart

“A heart murmur,” explains Dr. Washington, “is merely the sound of the heart vibrating slightly or valves opening and closing as blood flows through it. There are probably fifty different types, each with its own distinctive sound. Most of them,” he emphasizes, “are perfectly normal.” As many as four in five young people have these “innocent” murmurs now and then. Unless the murmur occurs during a doctor’s visit, it generally goes undetected. An abnormal murmur, which a pediatrician can identify with a stethoscope, indicates a heart condition that may require further diagnostic testing, possibly by a pediatric cardiologist. Possible causes include infections of the heart (endocarditis, myocarditis), faulty valves and cardiac defects that had been present since birth. Normal heart murmurs don’t call for limits on activities. With abnormal murmurs, says Dr. Washington, “the underlying cause will determine whether restrictions are necessary.”


Birth Control for Young Women with a Congenital Heart Defect

Birth Control for Young Women with a Congenital Heart Defect

Understanding the risks and benefits of different birth control methods is important for all women. For women with a congenital heart defect (CHD), choosing the right birth control is critical to maintaining a healthy heart.

Questions to Ask Yourself:

Selecting birth control when you have a CHD requires you to think about all aspects of your life.  Some typical questions might be:

  • Do I ever want to become pregnant? If so, when might that be?
  • Will pregnancy be too risky with my heart condition? 

Some women with a CHD have a very high risk for medical complications if they become pregnant. If this is you, it is important to use a very effective form of birth control or to consider permanent sterilization.

If pregnancy could be dangerous to your health but you would like to have a family, talk to your doctor about other options, such as adoption or surrogacy. Deciding not to have children is a perfectly acceptable option, too, if that is what you choose.

Types of Birth Control:

Women with a CHD who are able to have a safe or low risk pregnancy but are not ready to become pregnant yet have many options for birth control.

  • Some methods are more effective than others and some also last longer than others.
  • Some methods contain the hormones estrogen and/or progesterone (e.g. oral medications, skin patches, vaginal rings, implants).
  • Some forms of birth control use a “barrier” method to block sperm from entering the uterus (e.g. condoms, copper intrauterine devices or IUDs, diaphragms).

Benefits & Risks of Birth Control Methods:

There are different risks and success rates for the various forms of birth control.

  • Condoms have little physical risk to women. They are also highly effective at protecting against sexually transmitted diseases. However, they do not always work well at preventing pregnancy. In fact, they have a failure rate as high as 30%.
  • Birth control pills are usually reliable at preventing pregnancy. However, some forms bith control pills contain estrogen which can increase the risk of stroke and other medical complications related to the increased risk of blood clots. Estrogen is not recommended if you have a CHD and are at increased risk of forming blood clots, especially if you have an artificial heart valve or have had a Fontan operation.
  • Progesterone-only birth control methods have a lower risk of blood clots. Progesterone can be taken as a pill, placed as an implant under the skin, given as monthly injections or used in an IUD. A progesterone pill must be taken at the same time every day. Progesterone forms of birth control are often good choices if you have a CHD. They can be highly effective when they are used the right way.
  • Progesterone IUD is a very effective method if you do not want to become pregnant for at least a few years.
  • Two forms of birth control are recommended if you are sure you never want to become pregnant or are at very high risk for a dangerous pregnancy. You may consider a tubal ligation or other permanent form of birth control, as well. If you have a long-term male partner, you may consider asking him to have a vasectomy.

Talk to your gynecologist about which form of birth control is best for you based on the recommendations of your congenital cardiologist.

Additional information regarding congenital heart defects and lifelong cardiac care is available at the Congenital Heart Public Health Consortium (CHPHC) website, www.chphc.org. The CHPHC is housed at the American Academy of Pediatrics through a grant from the Centers for Disease Control and Prevention in an effort to utilize public health principles to affect change for those whose lives are impacted by a CHD. Organizational members of the Consortium represent the voice of providers, patients, families, clinicians and researchers.


Heart Disease: Reduce Your Child’s Risk

Heart Disease: Reduce Your Child’s Risk

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.


Teaching Health Education in School

Teaching Health Education in School

Many parents are keenly interested in the basic academic education of their youngsters—reading, writing, and arithmetic—but are not nearly as conscientious in finding out about the other learning that goes on in the classroom. A comprehensive health education pro­gram is an important part of the curriculum in most school districts. Starting in kindergarten and continuing through high school, it pro­vides an introduction to the human body and to factors that prevent illness and promote or damage health.

The middle years of childhood are extremely sensitive times for a number of health issues, especially when it comes to adopting health behavior that can have lifelong consequences. Your youngster might be exposed to a variety of health themes in school: nutrition, disease prevention, physical growth and development, reproduction, mental health, drug and alcohol abuse prevention, consumer health, and safety (cross­ing streets, riding bikes, first aid, the Heimlich maneuver). The goal of this ed­ucation is not only to increase your child’s health knowledge and to create positive attitudes toward his own well-being but also to promote healthy be­havior. By going beyond simply increasing knowledge, schools are asking for more involvement on the part of students than in many other subject areas. Children are being taught life skills, not merely academic skills.

It is easy to underestimate the importance of this health education for your child. Before long he will be approaching puberty and adolescence and facing many choices about his behavior that, if he chooses inappropriately, could im­pair his health and even lead to his death. These choices revolve around alco­hol, tobacco, and other drug use; sexual behavior (abstinence, prevention of pregnancy and sexually transmitted diseases); driving; risk-taking behavior; and stress management. Most experts concur that education about issues like alcohol abuse is most effective if it begins at least two years before the behav­ior is likely to start. This means that children seven and eight years old are not too young to learn about the dangers of tobacco, alcohol, and other drugs, and that sexuality education also needs to be part of the experience of elementary-school-age children. At the same time, positive health behavior can also be learned during the middle years of childhood. Your child’s well-being as an adult can be influenced by the lifelong exercise and nutrition habits that he adopts now.

Health education programs are most effective if parents are involved. Par­ents can complement and reinforce what children are learning in school dur­ing conversations and activities at home. The schools can provide basic information about implementing healthy decisions—for instance, how and why to say no to alcohol use. But you should be a co-educator, particularly in those areas where family values are especially important—for example, sexu­ality, AIDS prevention, and tobacco, alcohol, and other drug use.

Many parents feel ill-equipped to talk to their child about puberty, repro­duction, sex, and sexually transmitted diseases. But you need to recognize just how important your role is. With sexual topics—as well as with many other ar­eas of health—you can build on the general information taught at school and, in a dialogue with your youngster, put it into a moral context. Remember, you are the expert on your child, your family, and your family’s values.

Education seminars and education support groups for parents on issues of health and parenting may be part of the health promotion program at your school. If they are not offered, you should encourage their development. Many parents find it valuable to discuss mutual problems and share solutions with other parents. Although some parents have difficulty attending evening meet­ings, school districts are finding other ways to reach out to parents—for in­stance, through educational TV broadcasts with call-in capacities, Saturday morning breakfast meetings, and activities for parents and children together, or­ganized to promote good health (a walk/run, a dance, a heart-healthy luncheon).

In addition to providing education at home on health matters, become an advocate in your school district for appropriate classroom education about puberty, reproduction, AIDS, alcohol and other substance abuse, and other relevant issues. The content of health education programs is often decided at the community level, so make your voice heard.

As important as the content of a health curriculum may be, other factors are powerful in shaping your child’s attitudes toward his well-being. Examine whether other aspects of the school day reinforce what your youngster is be­ing taught in the classroom. For example, is the school cafeteria serving low-fat meals that support the good nutritional decisions encouraged by you and the teachers? Is there a strong physical education program that emphasizes the value of fitness and offers each child thirty minutes of vigorous activity at least three times a week? Does the school district support staff-wellness programs so that teachers can be actively involved in maintaining their own health and thus be more excited about conveying health information to their students?

In addition to school and home, your pediatrician is another health educator for you and your child. Since your child’s doctor knows your family, he or she can provide clear, personalized health information and advice. For in­stance, the pediatrician can talk with your child about the child’s personal growth patterns during puberty, relate them to the size and shape of other family members, and answer questions specific to your youngster’s own de­velopmental sequence and rate.

For most school-related health concerns, your pediatrician can provide you with specific advice and tailored guidance. You and your pediatrician may also consult with the school staff on how to deal most effectively with school time management of your child’s health problem.