Tag Archives: congenital heart defects
Today is not normal.

Today is not normal.

February 7, 2013

Today should have been a celebration of my husband’s birthday.

Today should have been a day to rally around Congenital Heart Awareness Week.

Today should have been the start of our wedding reunion weekend in California.

Today should have been a day to finish up some work, get the kids to school, face the Minnesota winter.

But that’s not today.

Today our 4-year-old daughter Eve, is having neurosurgery – 1500 miles from home – to remove a brain tumor.  Nothing about today is normal.

I do not want to know what a cranial resection entails, no more than I wanted to know what a heart ablation or mitral valve prolapse entailed 4 years ago.

I do not want to understand that my little girl will be awakened mid-surgery, while her skull is still open, to make sure her limbs can move.

I do not want to know her fear and confusion.  I do not want her to be in pain.

I do not want to know that this sweet child, who has not been on this planet even 50 months, has had two heart surgeries and a brain surgery.

I do not want to know.  But I must know.

That is our job, as her parents and protectors.  To be smart and strong.  To understand what we can, and question what we don’t.  No stone can be left unturned.

I have no idea how such misfortune could befall one small girl.  But I do know her scars – on her chest, and now on her sweet head – will not define her.  They are part of her journey now – but her life will have meaning and beauty and power not because of the scars, but in spite of them.  Yes, I hope that somehow these new challenges will make a difference in other lives, as I know her heart has.  That is the only way to see around the randomness of it all.

Until today, we were 1in100.  Now we are also 1in1000.  Childhood brain tumors affect 4,200 kids in the U.S. each year.  Almost the same number of infants – less than one year old – die each year in the U.S. from congenital heart disease.  Comparing statistics is one thing. Comparing merit is quite another.

So, in honor of Eve, this is my small contribution to CHD Awareness Week: to NEVER again compare funding dollars or research numbers between horrific pediatric diseases.  I don’t care how common or downright rare the disease is.  If it’s your child, there is but one answer: make it go away.

Just because pediatric heart disease is more prevalent than pediatric cancer does not make it more important. Comparing research methodologies or means for two wildly different diseases is like comparing a paddleboat to a jetski.

Awareness is nothing without data. Data is nothing without people. People are nothing without collaboration. Collaboration is what makes the information meaningful enough to do something with it. I don’t care if you are a parent, a physician, a researcher or a technician – no one wants to feel like they are bringing a toothpick to a gunfight. Listen to each other. Learn from each other. Share information that can improve chances.

No one wants children to have their chests or skulls cut open to survive.  Even the doctors that do it don’t want to do it. They just have to do it.

Until we can prevent these things from happening in the first place, today we have early detection, access to effective treatment, meaningful data, constantly improving technologies and collaboration.

Today is not normal. Today my daughter becomes both a heart survivor and a brain tumor survivor. And she is amazing.

 

 

Collateral Damage

Collateral Damage

I had an opportunity to be in Boston a few days ago – and to visit Children’s Hospital Boston.  A fellow Minnesota family is there right now with their 8 month old baby girl, recovering (beautifully) from a heart surgery at the hands of Eve’s surgeon, Dr. del Nido (their cardiologist at the University of Minnesota Amplatz Children’s Hospital is also ours, Dr. Kochilas.)  Baby Maddy’s room was two doors down from our old room – 8E, right across from the nurses station.  It all came flooding back.

It was 3 years ago this week that my husband and I flew our 3.5 month old baby from Minnesota to Boston to fix her heart.  She had just a couple weeks left to live.  I don’t remember being anxious or afraid. I remember being confident.  We were doing the right thing. She was going to come home with us and grow up to be a happy, healthy girl.  Somehow I knew this to be true.

I’ve told people many times since, that it was our mission at that time to never bring fear or pain into Eve’s ecosystem.  No matter how tired, discouraged or nervous we were along her difficult newborn journey – we were always positive and upbeat around her hospital bed.  Always.

There was always a scarf in her little isolette that smelled like mommy or daddy.  We must have recited Brown Bear, Brown Bear a thousand times.  We played the Disney Lullabies CD over and over.  And that musical seahorse.  I still wake up hearing that sometimes…

Even during pokes and painful procedures, we would just tell her how we were sorry, but that she was so very brave and strong. She needed us.  That is certain.

Sometime when we took a walk outside her room, it was all we could do to stand.  There’s no way to explain this type of sheer exhaustion unless you’ve been there.  We needed others – to lean on when we left her room.  Our hearts shine from the friendships we have gained because of Eve and her broken heart.  For every lost friend (unfortunately there were some), we have gained 10 new ones.

One of the great human tragedies of pediatric disease is the loss of friends, family, support systems. Again, no one can understand unless they have been through it. Nearly every day, I hear a heartbreaking story of how a best friend never came to visit the hospital.  How parents, brothers, sisters…and yes, even spouses, just bail. Sick infants are not the things of story books and fairy tales.  Tubes, wires, monitors, cuts, stitches, blood.  Congenital heart disease is an abomination.  No child should have it.  Period.

But until the day when children suffer disease no more, reach into your soul to BE THERE for those you know going through a traumatic health experience with their child.  BE THERE for those you barely know.  And BE THERE for those you don’t know. Suck. It. Up.

Eve is 3 now. She is the happy little girl I promised her she would become.  And someday soon, I hope we can share her amazing story with her – and teach her one of the most valuable word in the human vocabulary: compassion.

Finding Christmas.

Finding Christmas.

Three years ago today we spent Christmas Day at the side of our daughter Eve’s isolette in the PICU at the University of Minnesota Amplatz Children’s Hospital.  She was 13 days old.  It was the first – and likely the only time I will see Santa cry.

People still comment on how horrible that must have been – spending Christmas in the hospital with a sick baby, away from our other children and family.  I don’t remember it that way.  I remember the exponential gratitude of being there, where Eve was being nurtured and cared for by experts. She was struggling, but she was alive.  That’s what mattered.  And it was in that spirit of hope that Christmas remains the most sacred of days for us.

Here’s my wish – today and every day:  that people recognize the blessing of having access to medical teams that can heal broken hearts.  This is reality. In 98 percent of the rest of world, we would have just been another set of grieving parents.  Eve would have never survived for 13 days.  She would have been gone.

To those sitting in those hospital rooms tonight, we wish you hope, grace and comfort.  May your babies come home soon and thrive.  To those who know others sitting in hospital rooms tonight, find it in your hearts and in your hectic schedules to GO THERE.  Be there for those enduring this journey.  We know it’s hard.  Sick babies and children are not the things Christmas dreams are made of.  In fact, it’s just downright wrong. Anytime. Anywhere.  But these families need you.  Show up.  Be present.  Give, if you can.

During that first month, 3 co-workers and less than half a dozen friends visited us there.  I understood why, but that didn’t make it any easier.  Much of the saving grace came from emails, facebook posts and blog entries.  In this community of congenital heart defects, virtual strangers become virtual lifetime friends.  We find out how many 1in100′s there are. Perhaps that is the gift of adversity.  And it is an amazing thing to behold.

In recognition of National Birth Defects Prevention Month, CDC has been posting  articles on its home page throughout the month related to birth defects. The first feature was highlighting congenital heart defects – check out the CDC homepage: http://www.cdc.gov/Features/HeartDefects/.  Another note, the CDC is playing an important role in the development of implementation guidelines for routine pulse oximetry screening of newborns to detect Critical Congenital Heart Disease.  Their role in monitoring screening results and outcomes will be pivotal in finding CHD patterns that may be linked to geography or other environmental factors…in other words – research and monitoring come together to target the problems and find solutions to hammer away at CHD.  Good news for the 1in100 touched by this destructive disease.

Congenital Heart Defects
January is National Birth Defects Prevention Month. Congenital heart defects, one of the most common types of birth defects, affect nearly 1% of all infants born in the US. Learn more.

Understanding Congenital Heart Defects
Congenital heart defects are conditions present at birth that affect the structure and function of the heart. They are a leading cause of infant death from birth defects during the first year of life.1 In 2004, hospitalization costs for congenital heart defects among people of all ages totaled $1.4 billion.2 CDC works to identify causes and prevention opportunities for birth defects, including congenital heart defects, by applying a public health approach that incorporates three essential elements: surveillance or disease tracking, research to identify causes, and prevention research and programs.

Surveillance of Congenital Heart Defects
To track congenital heart defects, CDC has established state-based birth defects surveillance systems. Today, 31 states include congenital heart defects in their birth defects monitoring efforts. Information obtained from these systems is used to:

Understand the characteristics of affected children
Identify health disparities in the occurrence of congenital heart defects and survival of those affected
Plan for services across the life span
Help to ensure that children with congenital heart defects receive necessary medical care and services.

In addition, information from surveillance systems provides a basis for research studies designed to identify potential causes and opportunities for preventing congenital heart defects and promoting the health of affected people.

Identifying Preventable Causes
CDC coordinates the largest population-based effort in the U.S. to identify the preventable causes of birth defects: the National Birth Defects Prevention Study. Population-based studies like this one evaluate the occurrence of disease across a wide group of people, which is important to make sure that study results are applicable to the US population.

Recently, CDC’s study collaborators have reported important findings about some pregnancy exposures that increase the risk for congenital heart defects:

Obesity – women who are obese before pregnancy were shown to have an increased risk of having a pregnancy affected by a congenital heart defect;
Diabetes – women with diabetes diagnosed before pregnancy are more at risk of having a child with a number of birth defects, including congenital heart defects;
Smoking – women who smoked anytime during the month before pregnancy through the end of the first trimester were more likely to have a pregnancy affected by a congenital heart defect.

Next Steps in Preventing Congenital Heart Defects
CDC’s unique ability to study the occurrence of disease in the population holds promise for identifying risk factors for congenital heart defects that can be translated into prevention strategies. Although researchers are learning more about congenital heart defects, much work remains. For example, researchers are:

Investigating the possible effects of other common exposures, such as maternal fever, infection, and medications.
Exploring approaches to decrease the number of women with uncontrolled diabetes during pregnancy to prevent congenital heart defects as well as other major birth defects.
Evaluating long term outcomes, health care costs, and quality of life to identify opportunities that will support the health and wellness of children and adults affected by congenital heart defects.

CDC’s research on the causes of heart defects highlights the need for birth defects prevention strategies for women of childbearing age. Reducing obesity, providing better control of diabetes, and preventing tobacco exposure during pregnancy are all actions we can take today that hold promise for preventing congenital heart defects.

CoverGirl

CoverGirl

Oh my.  Just got this today – we understand the newsletter also goes to pediatricians and cardiologist around the country.  So proud of our little Eve.  She has done some wonderful things in her short time here…thank you University of Minnesota Amplatz Children’s, Mayo Health System, Children’s Hospitals, Regions Hospital and Minnesota Department of Health for all you have done to make sure babies don’t go home with undiagnosed heart defects.  Rockstars.  All of you…

file:///Users/annamarie/Desktop/UMACH_CVHeartCenter_v5.pdf

CHD 101

CHD 101

The Internet Encyclopedia of Science has gathered what may be the most compact, yet comprehensive chunk of helpful info on congenital heart defects ever assembled.  It’s easy to read, easy to understand and provides a launching pad for those new to pediatric heart disease.  Know more.  Do more.

congenital heart defects


A congenital heart defect is a structural problem (or defect) in the heart that is present at birth. A baby’s heart begins to develop shortly after conception. During development, structural defects can occur. These defects can involve the walls of the heart, the valves of the heart, and the arteries and veins near the heart. Congenital heart defects can disrupt the normal flow of blood through the heart. The blood flow can:

  • Slow down
  • Go in the wrong direction or to the wrong place
  • Be blocked completely

Congenital heart defect is the most common type of major birth defect. Each year, more than 40,000 babies in the United States are born with congenital heart defects.

Types of congenital heart defects

There are many types of congenital heart defects. They include:

  • Abnormal passages in the heart or between blood vessels
  • Problems with the heart valves
  • Problems with the placement or development of blood vessels near the heart
  • Problems with development of the heart itself

Some of these problems are described below.

Abnormal passages in the heart or between blood vessels

  • Atrial septal defect (ASD) is a hole in the wall that separates the upper chambers, or atria, of the heart. This causes blood to leak from one atrium to the other.
  • Ventricular septal defect (VSD) is a hole in the wall that separates the lower chambers, or ventricles, of the heart. This causes blood to leak from one ventricle to the other.
  • Atrioventricular septal defect (AVSD) includes an ASD, VSD, and abnormal development of the atrioventricular valves (tricuspid and mitral). This causes blood to flow abnormally inside the heart. An AVSD is also known as an atrioventricular canal defect.
  • Patent ductus arteriosus (PDA) is a persistent connection between the aorta and the pulmonary artery. This connection is called the ductus arteriosus and is normally present before birth. In most babies, the vessel closes within a few hours or days after birth. In some children, the vessel fails to close, resulting in PDA.

Problems with the heart valves

Congenital heart defects can involve any of the valves and include the following types of problems:

  • Stenosis. The valve opening is narrow and does not open completely.
  • Atresia. The valve does not form, so there is no opening for blood to pass from one chamber to another.
  • Regurgitation. The valve does not close completely, so blood can leak back through the valve.

Examples of particular heart valve problems include:

  • Aortic valve stenosis is a narrowing of the aortic valve in the heart that causes it to open incompletely. This can reduce blood flow to the body.
  • Pulmonary valve atresia is a defect in which a solid sheet of tissue forms in place of the pulmonary valve. This prevents blood in the right side of the heart from traveling normally to the lungs to pick up oxygen.
  • Pulmonary valve stenosis is a narrowing of the pulmonary valve. The narrowing slows the flow of blood from the right side of the heart to the lungs. The heart must pump harder to push blood through the smaller opening.
  • Tricuspid valve atresia is a defect in which a solid sheet of tissue forms in place of the tricuspid valve. Without the tricuspid valve, blood entering the right atrium cannot travel normally to the right ventricle and then to the lungs to pick up oxygen.
  • Ebstein’s anomaly is a defect in which the tricuspid valve is both displaced and abnormally formed. The valve leaks and allows blood to flow back into the right atrium instead of to the lungs to pick up oxygen.

Problems with placement or development of blood vessels near the heart

  • Transposition of the great vessels is a defect in which the location of the “great vessels” (the aorta and pulmonary artery) coming off the heart is switched. The aorta comes off the right ventricle instead of the left ventricle. The pulmonary artery comes off the left ventricle instead of the right ventricle. Therefore, blood without oxygen is continually pumped to the body, instead of blood with oxygen.
  • Tetralogy of Fallot is a combination of four defects:
    • Pulmonary valve stenosis is the narrowing of the pulmonary valve. The narrowing slows the flow of blood from the right ventricle to the lungs.
    • VSD is a hole in the wall that separates the left and right ventricles.
    • Overriding aorta is a defect in which the aorta is positioned between the left and right ventricles, over the VSD.
    • Right ventricular hypertrophy is the thickening of the right ventricle. The thickening is caused by the heart having to work harder because of the other defects.
  • Truncus arteriosus is a defect of the great vessels. The aorta and pulmonary artery do not form as separate arteries. Instead, a large artery, called the truncus, comes from the heart. As the truncus leaves the heart, it may branch into arteries that carry blood to the body and to the lungs.
  • Coarctation of the aorta is a narrowing of the aorta. It slows or blocks the flow of blood from the heart to the body.
  • Anomalous pulmonary venous return is a defect in which one or more of the four pulmonary veins, which normally return oxygen-rich blood from the lungs to the heart, return to the wrong chamber in the heart.

Problems with development of the heart

  • Hypoplastic left heart syndrome is a combination of defects in which the left side of the heart does not develop properly. Defects usually include mitral atresia, aortic atresia, and a tiny left ventricle.
  • Mitral atresia occurs when a solid sheet of tissue forms instead of the mitral valve, which separates the left atrium and the left ventricle.
  • Aortic atresia occurs when a solid sheet of tissue forms instead of the aortic valve, which separates the left ventricle from the aorta.
  • Single ventricle describes a group of heart defects in which only one ventricle is present instead of two. It can be a single right or a single left ventricle. The other ventricle is usually absent or very tiny. Hypoplastic left heart syndrome is an example of a single ventricle defect.

Today, the outlook for an infant born with a heart defect is much better than it was 30 years ago. Rapid advances in infant and childhood surgery, better tests, and new medicines help most children with congenital heart defects. Many children born with more complex or severe heart defects now reach adulthood. Today, there are more than 1 million adults living with congenital heart defects.

What causes congenital heart defects?

Doctors do not know what causes most cases of congenital heart defects. Heredity may play a role. In rare cases, more than one child in a family is born with a heart defect. Also, parents who have a congenital heart defect may be more likely than other parents to have a child with the condition.

Babies who have certain other birth defects, such as Down’s syndrome, are also more likely to have congenital heart defects.

Other factors that raise the risk for congenital heart defects are:

  • Having viral infections, such as German measles (rubella), during pregnancy
  • Having diabetes
  • Taking some types of prescription or over-the-counter medicines during pregnancy
  • Being repeatedly exposed to some chemicals or X-rays during pregnancy
  • Using alcohol or street drugs during pregnancy

Research continues to find the causes of congenital heart defects.

Signs and symptoms of congenital heart defects

The most common signs and symptoms of congenital heart defects are:

  • A heart murmur
  • A bluish tint to skin, lips, and fingernails (“blue baby”)
  • Fast breathing
  • Shortness of breath
  • Poor feeding, especially in infants because they tire easily while nursing
  • Poor weight gain in infants
  • Tiring easily during exercise or activity (older children)

The signs and symptoms that a child has depend on:

  • The number and types of defects
  • The severity of the defect

Some infants and children have no signs or symptoms. Others have severe or life-threatening symptoms.

Many types of congenital heart defects cause the heart to work harder than it should. This stresses the heart and can lead to heart failure, causing the heart muscle to weaken and the heart to enlarge.

Diagnosis

Doctors usually diagnose congenital heart defects during pregnancy or within the first few months after birth. Some children with less severe defects are not diagnosed until they are older and more demands are put on their hearts. Others are not diagnosed until they are adults.

If your child’s doctor suspects a congenital heart defect, he or she will refer your child to a specialist who treats heart problems in children. The specialist, a pediatric cardiologist, will take a family and medical history, do a physical exam, and order several tests.

Physical exam

During the physical exam, the doctor:

  • Listens to your child’s heart with a stethoscope for a heart murmur
  • Looks for signs of illness or physical problems, such as bluish color of skin and lips, shortness of breath, rapid breathing, and delayed growth Listens to your child’s lungs

Tests

An echocardiogram, which is harmless and painless, uses sound waves to create a moving picture of your child’s heart. During an echocardiogram, reflected sound waves outline the heart’s structure completely. The test allows the doctor to clearly see any problem with the way the heart is formed or the way it’s working. An echocardiogram is the most important test available to your child’s cardiologist to both diagnose a heart problem and follow the problem over time. In children with congenital heart defects, an echocardiogram will outline each problem with the heart’s structure and show how the heart is reacting to these problems. The echocardiogram will help your child’s cardiologist to know if and when treatment is needed.

During pregnancy, if your doctor suspects that your baby has a congenital heart defect, a special test called a fetal echocardiogram can be done. This test uses sound waves to create a picture of the baby’s heart while the baby is still in the womb. The test is usually done during the fifth month of pregnancy. If your child is diagnosed with a congenital heart defect before birth, your doctor can plan treatment before the baby is born.

Other tests used to help diagnose congenital heart defects include:

  • EKG (electrocardiogram). An EKG test measures the rate and regularity of your child’s heartbeat.
  • Chest X-ray. A chest X-ray takes a picture of your child’s heart and lungs. It can show if the heart is enlarged or if there is fluid in the lungs.
  • Pulse oximetry. This test uses a sensor to see how well your child’s lungs are passing oxygen to the blood and whether there is any mixing of oxygen-rich and oxygen-poor blood. The sensor is placed on the child’s fingertip or toe (like an adhesive bandage). A small computer unit shows the amount of oxygen in the blood through the skin. The test does not hurt.
  • Cardiac catheterization. In this test, a thin flexible tube is passed through an artery or vein at the upper thigh (groin) or in the arm to reach the heart. With the assistance of X-rays, the doctor can then see your child’s blood vessels and heart. The catheter also measures the pressure inside the heart and blood vessels and can determine if blood is mixing between the two sides of the heart. Sometimes, a dye that can be seen by X-ray is injected into the heart. This enables the doctor to see the flow of blood throughout the heart and blood vessels.

Treatment

Doctors treat congenital heart defects with:

  • Medicines
  • Special procedures using catheters
  • Surgery
  • Heart transplants

The treatment your child receives depends on the type and severity of the defect. Other factors include your child’s age, size, and general health. Treatment can be simple or very complex. Many children are treated with medicines and are monitored by their doctor. Other children may need surgery.

Medicines

Your child may take one or more of the following medicines to help the heart work better and lessen symptoms: Digoxin is thought to improve heart function and can keep the heartbeat regular. Diuretics treat the buildup of fluid in the heart and body. ACE inhibitors decrease the work the heart has to do and may help remodel the heart and blood vessels to work more efficiently. Beta blockers slow the heart rate and lower blood pressure to decrease the workload on the heart. Inotropes strengthen the heart’s pumping ability. Prostaglandin E1 is used to keep the ductus arteriosus open in some defects until corrective surgery can be carried out. This improves blood flow and oxygen levels until the defect is corrected. The ductus arteriosus normally closes within a few days after birth.

Special procedures using catheters

Doctors can correct some congenital heart defects during cardiac catheterization. These are called catheter-based procedures or interventions. They can be used instead of open-heart surgery, which is a major operation. A catheter is inserted through a blood vessel in your child’s groin. It is then threaded to the heart, where some holes in the interior walls of the heart can be fixed, a patent ductus arteriosus can be closed, and narrow valves and blood vessels can be opened up. Cardiac catheterization:

  • Does not require your child’s chest to be opened
  • Lets your child recover quickly
  • Has different risks than open-heart surgery

Surgery

Your child may need open-heart surgery if the defect can’t be repaired using a catheter-based procedure. Some surgeries repair the defect completely. Other surgeries improve the child’s health but do not completely repair the defect. Open-heart surgery may be done to:

  • Close holes with stitches or with a patch
  • Repair valves
  • Widen arteries or openings to valves
  • Put the great vessels (aorta and pulmonary artery) in their correct positions

Sometimes, open-heart surgery can improve a child’s health but not repair the problem. Examples include:

  • Decreasing blood flow to the lungs by placing a band around the pulmonary artery
  • Increasing blood flow to the lungs by connecting an artery from the aorta to the pulmonary artery
  • Connecting the veins that bring oxygen-poor blood directly to the pulmonary artery in a three-stage surgery when the right ventricle is not developed (for example, hypoplastic left heart syndrome)

Heart transplants

Babies born with multiple defects that are too complex to repair may need a heart transplant. In this procedure, the child’s heart is replaced with a healthy heart that has been donated.

How can congenital heart defects be prevented?

There is no known way to prevent congenital heart defects, but there are things you can do to lower the chance that your baby will have a congenital heart defect. However, even after you lower the risks, your baby may still develop a congenital heart defect.

If you are planning to become pregnant or are pregnant, talk to your doctor about any medicines that you are taking, including:

  • Over-the-counter medicines
  • Prescription medicines
  • Vitamin and mineral supplements
  • Herbal supplements

Your doctor will recommend that you take folate before you become pregnant. This is recommended mainly to prevent abnormalities in the baby’s nervous system, and there is some evidence that it may also help prevent certain types of congenital heart defects.

You should avoid:

  • Strong chemicals, including some cleaning products
  • Repeated exposure to X-rays
  • Any harmful or poisonous materials.

If you or anyone in your family has congenital heart disease, genetic testing may be available. This may show a genetic cause for congenital heart disease. Testing cannot prevent congenital heart disease, but may be able to make you aware of the risks.

Living with a congenital heart defect

With new advances in testing and treatment, most children with congenital heart defects grow into adulthood and live productive lives. Some continue to need specialized care for survival and to maintain a good quality of life. Some may need multiple procedures, including cardiac catheterizations and surgeries. Others may need pacemakers to help their hearts beat properly.

Parents

Mothers of children born with a heart defect often think that they did something wrong during pregnancy to cause the problem. The cause of most cases of congenital heart defects is unknown. It is important that mothers know that they did not cause their child’s illness.

Most children with congenital heart defects grow up to a healthy adulthood. Only children with complex heart defects may continue to need special medical attention into adulthood.

Treatment and care for your child may be costly. The cost of surgery and hospital stays is very high. Your health insurance may not pay for everything. Some parents may need help in paying medical bills. You can get information from your doctor and hospital about how to apply for financial aid.

It is important to keep your health insurance current. If you change jobs, make sure that the new health insurance will cover your child who has a congenital heart defect. Some health insurance plans may not cover some medical conditions that you or your covered family member had before joining the new plan.

It is also very important for your child to have health insurance as adulthood approaches. Review your current health insurance plan. Find out how coverage can be extended to your child beyond the age of 18. Some policies may allow you to keep your child on your plan if he or she remains in school or is disabled.

Caring for a child with a serious heart problem can be demanding. If both parents work, one of them may have to quit and stay home with the child if suitable day care can’t be found. The drain on energy, emotions, and finances can be very stressful. Ask your child’s doctor about support groups and other types of support in your area. Seek counseling if the stress is overwhelming.

General issues

It is important for your child to have ongoing regular medical care. This includes:

  • Following up with your child’s heart specialist as directed
  • Following up with your child’s pediatrician or family doctor for routine exams
  • Taking medicines as prescribed

You may consider having your child wear a medical alert bracelet or necklace. This tells anyone caring for your child that your child has a congenital heart defect.

Adults, teenagers, and children should have routine dental care to prevent infections of the mouth. Most people with congenital heart defects need to take antibiotics before a dental procedure, treatment, or cleaning. Talk to your doctor before going to the dentist.

Children with congenital heart defects

Some children with congenital heart defects do not grow and develop as fast as other children who are the same age. Your child may be smaller and thinner than other children. Your child may also start activities such as rolling over, sitting, and walking later than other children. After treatments and surgery, growth and development often improve.

Your child may need extra calories to grow. If your child’s heart has to pump faster because of the defect, the body needs more energy to keep up the extra work. This may cause your child to tire quickly. Some babies are not able to eat enough because they tire while feeding. Older children also may tire before finishing a meal.

Exercise for children

Exercise helps children strengthen their muscles and stay healthy. Your child may tire easily, so he or she should rest or take frequent breaks during activities, if necessary. Some children with congenital heart defects may need to limit the amount or type of exercise they do. Talk to your doctor about what is safe exercise for your child.

Remember to ask your doctor for a note for school and other organizations describing any limits on your child’s exercise or physical activities.

Emotional issues for children

Children with a serious heart problem may have a hard time coping or may feel isolated if they have to be in the hospital frequently. Some children feel sad or frustrated with their body image and their inability to be a “normal” kid. Sometimes brothers or sisters are jealous of all the attention received by the child with a congenital heart defect.

Parents may feel stress over financial and insurance issues. Your child may feel that he or she is the cause of this stress. Help your child by talking to him or her, and allow your child to be involved in everyday activities. If you have concerns about your child’s emotional health, talk to your child’s doctor.

Teenagers with congenital heart defects

The teenage years are difficult for most children. It is a time of risk taking, and denial is often used as a way of coping. There is pressure to be like other teenagers. Some teenagers with congenital heart defects still need specialized care and must take medicine on a regular basis. Help your teenager cope with the stresses of growing up with a serious health problem. Remind your teenager that, with proper care, he or she can grow up healthy and participate in most, if not all, activities.

Let your teenager help make decisions about medical care. This fosters independence and encourages regular followup with the doctor.

Many teenagers with congenital heart defects can participate in organized sports. Restrictions of activity vary depending on the teenager, the type of sport, and the type of heart defect. Some children may need to limit the amount of activity, and others may need to avoid contact sports. Your doctor can help you and your teenager decide which activities are right for him or her.

Overall, parents should be aware that the majority of children born with congenital heart defects live normal, healthy lives and should be encouraged to do so.

Adults with congenital heart defects

Today, most babies born with heart defects will live to be adults. Many of these adults believe that the surgery they had in childhood was a “cure” and may not realize that regular medical followup is needed to survive and maintain good health.

When thinking about changing jobs, adults with congenital heart defects should carefully consider the impact on their health insurance coverage. Some health plans have waiting periods or clauses to exclude some kinds of coverage. Before making any job changes, find out if the change will affect your health insurance coverage.

There are laws that protect people with congenital heart defects who are having trouble getting a job. The Americans with Disabilities Act and Work Incentives Improvement Act try to ensure equal hiring for all people, including those with health conditions.

Pregnancy and congenital heart defects

Women with congenital heart defects who want to become pregnant (or who are pregnant) should:

  • Talk to their doctor about health risks during pregnancy
  • Talk to their doctor about medicines that can be taken during pregnancy
  • Consult with specialists who take care of pregnant women with congenital heart defects