Posts Tagged ‘congenital heart defect’

Emory Saved My Life: One Patient’s Journey

kristen-leone250x250I was born with Congenital Heart Disease. The first four years of my life were spent in and out of hospitals, and the first two took an incredible toll on my family, particularly my mother. In 1976, at just two years of age, I became the first baby ever to survive open heart surgery. Little did I know that nearly 38 years later I would be fighting for my survival again; this is the story of how Emory saved my life.

It all started back in February, 2013. I woke up one morning coughing and feeling incredibly fatigued, and my symptoms continued to progress over the course of the next few months. By May, things had gotten much worse, to the point that getting up the stairs became a battle. I was having a normal lunch with my mother on July 6th of that year, and as we went to leave my heart suddenly began to race faster than I’ve ever felt before. I immediately knew something was seriously wrong.

I was rushed to the Emergency Room, my heart beating at 221 beats per minute. I spent the next two nights in the Cardiac Care Unit, until Monday, July 8th, when I was transferred to Emory University Hospital. When I got to Emory, I had two teams of cardiologists working on my situation, which was growing more dire by the moment. I was dealing with a bad lung infection, my complete blood count was down, and my heart and kidneys were beginning to shut down, leaving me completely hopeless.

I panicked. The realization that I may die hit me like a freight train. I yelled, cried and had a full-blown meltdown right there in the hospital. I was so frightened of what may come next. My doctor, realizing how scared and embarrassed I was, leaned over and told me, “It’s understandable, Kristin. You are allowed to feel what you’re feeling. Just know that you’re in safe hands now and we’re working on your case 24/7.” I’ve been in so many hospitals throughout my life, but at that moment I knew I was in the best possible place for me.

My doctors at Emory told me I had to have an Implantable Cardioverter Defibrillator (ICD), or “pacemaker” installed, and that without it my survival rate would be around seven percent. I was overjoyed to learn there was a solution to my problem. With my family by my side, I went through the surgery and was ready to endure the long hospital stay to get better.

My surgery was a success. I’d spend the next couple of weeks at the hospital recovering from my lung issues and getting healthy enough to retake control of my life.

My experience over those next weeks at Emory was eye opening. Aside from the top-notch medical service, the treatment my family and I received was incredible. We were kept informed of every decision that was being made, the doctors outlined a clear vision for my path to recovery, and they went above and beyond in their commitment to my comfort and health. In one instance, my doctor refused to go home for the night, staying at the hospital and checking on me every hour to make sure I was doing well.

When my family had questions they were answered immediately, and they were permitted to stay by my side throughout the lengthy recovery process. The entire staff, from the doctors all the way down to the custodians, was the friendliest group of people I’ve ever encountered in any hospital. I truly couldn’t have asked for a better place to get well.

I’m now almost two months removed from what I thought was certain death, and I’m so thankful to Emory for saving my life. Their compassion, love and patient care is something that I’m reminded of every day when I wake up and look in the mirror, because were it not for them I wouldn’t be here today.

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What Causes Congenital Heart Disease?

Congenital heartCongenital heart defects (CHDs) are the most common type of birth defect, affecting about 1% of infants born in the United States. While doctors can sometimes pinpoint the likely cause of a particular defect, most of the time the cause is uncertain.

Most CHDs are the isolated type, meaning that they occur alone without other birth defects. In most isolated CHDs, the cause cannot be determined and is generally assumed to be a combination of genetic (inherited) and environmental factors.

There are a number of genetic birth defects that often occur together with CHDs, including Down syndrome, Turner syndrome, Marfan syndrome and Williams syndrome. In these cases, a defect in the infant’s DNA causes the heart to develop improperly. For instance, about half of babies born with Down syndrome also have a CHD, most often a defect in the wall between the left and right sides of the heart (atrioventricular septal defect).

A mother’s exposure to certain substances during pregnancy can increase the risk for CHDs. Some medications increase risk, including certain acne and seizure medications. Environmental exposures can be more difficult to pinpoint but may contribute as well. A mother ingesting too much alcohol during pregnancy can also increase the risk of her infant being born with a heart defect.

In addition to environmental exposures, some health issues in pregnant women can play a role in increasing the risk for CHDs. These include infections such as rubella, as well as chronic conditions that are not under control, such as diabetes and lupus.

The Congenital Heart Center of Georgia was created to bridge the gap between pediatric and adult care for people with CHDs. If you were born with a CHD and haven’t been evaluated regularly by a cardiologist, you were recently diagnosed with a CHD or you have a child who will be transitioning into adult care in the near future, learn more about the Congenital Heart Center of Georgia and make an appointment today.

About Dr. Rodriguez

Fred Rodriguez, MDFred Rodriguez, MD, is a pediatric cardiologist who practices pediatric cardiology at the Children’s Healthcare of Atlanta Sibley Heart Center and adult congenital heart disease at the Emory Clinic and Emory University Hospital. Dr. Rodriguez earned his medical degree from the Louisiana State University at New Orleans School of Medicine, where he also completed his combined residency in both internal medicine and pediatrics. Following his residency, he completed a cardiology fellowship at Texas Children’s Hospital in Houston, with additional training in adult congenital heart disease. He is board certified in pediatrics, pediatric cardiology and internal medicine.

About the Congenital Heart Center of Georgia

The Congenital Heart Center of Georgia is a collaboration between Children’s Healthcare of Atlanta and Emory Healthcare. The Congenital Heart Center of Georgia is a comprehensive program for children and adults with congenital heart disease (CHD) that provides a continuum of lifesaving care from before birth through adulthood. It is the first comprehensive CHD program in the South and one of the largest in the country. The program is led by Emory Healthcare cardiologist Wendy Book, MD, along with Robert Campbell, MD, chief of cardiac services and director of cardiology at Children’s Sibley Heart Center. To schedule an appointment, please call 404-778-7777.

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Congenital Heart Defect Repair in Childhood: Will I Need Another Surgery?

congenital heart repairNot too long ago, most babies born with serious heart defects died in childhood. Thanks to advances in cardiac care, some estimates indicate that today as many as 90% of children with congenital heart disease (CHD) are able to live well into adulthood. In fact, there are now more adults than children living with CHD, and it has become increasingly clear that this growing population requires ongoing, specialized care. For instance, even if their defects are treated surgically in childhood, many patients will require additional surgery as adults to keep their hearts functioning correctly.

When many surgical procedures were first performed to correct congenital heart defects in children, the medical community generally assumed they were curative. But as the first generation of post-operative patients survived into adulthood, some began to develop late complications associated with the procedures they underwent as children.

Unfortunately, many of these late complications develop gradually and are associated with non-specific symptoms. In addition, CHD is so closely associated with infancy and childhood, that many patients assume they no longer need to worry about their condition once they have reached adulthood. Consequently, they may not make the connection between the symptoms they develop as adults and their CHD—especially if it was successfully corrected in childhood.

This relatively recent phenomenon bolsters the argument that patients with CHD—even if their defect was surgically corrected in childhood—need to continue regular follow-up with a congenital heart specialist into adulthood so that he or she can monitor for subtle changes that may indicate a serious problem.

Another issue with managing CHD in adulthood is that adult cardiologists may have difficulty treating conditions in hearts repaired—often effectively re-configured—by pediatric surgeons years earlier. Conversely, pediatric surgeons may be unfamiliar with the unique complications that can arise years later as “corrected” anatomy ages, and in general may not have the specific training and experience required to address congenital disease in adults.

In response to this growing crisis, Emory and Children’s Healthcare of Atlanta have teamed up to help ensure that patients with CHD don’t get lost to follow-up as they transition into adulthood. The Congenital Heart Center of Georgia combines the expertise of Children’s Sibley Heart Center with that of Emory’s Adult Congenital Heart Center to address this crucial need. It is the first program of its kind in the South and one of the largest in the country.

About Dr. Kogon

Brian E. Kogon, MD , is chief of Pediatric Cardiothoracic Surgery at Children’s Sibley Heart Center and Emory University Hospital , surgical director of the Adult Congenital Heart Disease Program at Emory University Hospital and director of the Congenital Cardiac Surgery Fellowship at the Emory University School of Medicine.

Dr. Kogon received his medical degree from the University of Cincinnati and completed his residency in general surgery and a fellowship in cardiothoracic surgery at Indiana University. He then went on to complete his fellowship in pediatric cardiac surgery at Emory University, joining the staff in 2004.

Dr. Kogon is now a nationally recognized leader in pediatric and adult congenital heart disease. He has numerous publications in peer-reviewed journals and presents nationally at the major cardiothoracic surgery society meetings. He has earned various awards over the years, most recently the Teacher of the Year award for Pediatric Cardiac Surgery from the Sibley Cardiology Fellowship Program and Emory University.

Dr. Kogon’s major areas of interest include pediatric cardiac surgery, cardiac transplantation and adult congenital heart surgery.

About the Congenital Heart Center of Georgia

The Congenital Heart Center of Georgia is a collaboration between Children’s Healthcare of Atlanta and Emory Healthcare. The Congenital Heart Center of Georgia is a comprehensive program for children and adults with congenital heart disease (CHD) that provides a continuum of lifesaving care from before birth through adulthood. The program is led by Emory Healthcare cardiologist Wendy Book, MD, Robert Campbell, MD, chief of cardiac services and director of cardiology at Children’s Sibley Heart Center, and Brian Kogon, MD, chief of Pediatric Cardiothoracic Surgery at Children’s Sibley Heart Center and Emory University Hospital and surgical director of the Adult Congenital Heart Disease Program at Emory University Hospital. To schedule an appointment please call 404-778-7777.

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Signs and Symptoms of Congenital Heart Defects

CDH BabyBecause congenital defects can decrease the heart’s ability to pump blood and deliver oxygen throughout the body, they often produce telltale signs. Below are some of the more common symptoms that indicate a baby may have congenital heart disease (CHD).

  • Heart Murmur

A heart murmur is often the first sign of CHD. In basic terms, a murmur is just an extra heart sound, in addition to the regular sounds of a beating heart. Heart murmurs usually don’t indicate the presence of any heart problem. Sometimes a doctor can use a stethoscope alone to determine whether a particular murmur is a sign of heart disease. In other cases additional tests are necessary to determine the exact nature of a murmur.

  • Breathing Difficulties

Breathing difficulty caused by blood building up in the lungs (lung congestion) is a sign of a serious defect that will likely need medical or surgical intervention in the first year of life. Lung congestion may be the result of excessive blood flow from the left side of the heart to the right side through an abnormal connection, such as a hole in the heart or a connection between major blood vessels that allows blood to bypass the heart. Congestion can also be the result of an obstruction in blood flow on the left side of the heart that causes blood to back up in the vessels returning blood from the lungs.

  • Blue Skin

Some CHDs result in an inadequate amount of oxygen in the blood, which can cause the baby’s skin to have a bluish tint, especially in the lips, tongue, fingernails and toenails—called cyanosis. Cyanosis can result from an obstruction of blood flow to the lungs or a hole within the heart that allows oxygen-poor blood to flow from the right side to the left side and out to the body. It can also be related to other heart issues, including an abnormal positioning (transposition) of the arteries leaving the heart.

  • Failure to Thrive

Another result of inadequate oxygen in the blood is that an infant may lose weight or not gain enough, or may take longer to reach developmental milestones. These symptoms can result directly from the body not receiving enough oxygen to thrive, or they may be an indirect consequence of the infant tiring during feeding because of a lack of oxygen and, as a result, not receiving enough nutrients.

  • Excessive Sweating

Many CHDs can cause excess blood flow through the lungs, which makes breathing more difficult. The increase in exertion required to breathe can, in turn, result in excess sweating. Because feeding is a common form of activity in babies, this excess sweating is often closely associated with feeding, though any activity that causes an increase in the infant’s breathing rate can also cause increased sweat production. Excess blood flow to the lungs can also accelerate the infant’s metabolism, a side effect of which is increased sweating.

If you notice any of these signs in your baby or child, call your doctor right away. If your doctor notices these signs, you may be referred to a pediatric cardiologist.

About Dr. Rodriguez

Fred Rodriguez, MDFred Rodriguez, MD, is a pediatric cardiologist who practices pediatric cardiology at the Children’s Healthcare of Atlanta Sibley Heart Center and adult congenital heart disease at the Emory Clinic and Emory University Hospital. Dr. Rodriguez earned his medical degree from the Louisiana State University at New Orleans School of Medicine, where he also completed his combined residency in both internal medicine and pediatrics. Following his residency, he completed a cardiology fellowship at Texas Children’s Hospital in Houston, with additional training in adult congenital heart disease. He is board certified in pediatrics, pediatric cardiology and internal medicine.

About the Congenital Heart Center of Georgia

The Congenital Heart Center of Georgia is a collaboration between Children’s Healthcare of Atlanta and Emory Healthcare. The Congenital Heart Center of Georgia is a comprehensive program for children and adults with congenital heart disease that provides a continuum of lifesaving care from before birth through adulthood. It is the first comprehensive congenital heart disease program in the South and one of the largest in the country. The program is led by Emory Healthcare cardiologist Wendy Book, MD, Robert Campbell, MD, chief of cardiac services and director of cardiology at Children’s Sibley Heart Center, and Brian Kogon, MD, chief of pediatric cardiothoracic surgery. To schedule an appointment, please call 404-778-7777.

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Congenital Heart Defects in Newborns

newbornCongenital heart defects (CHDs) are abnormalities present at birth that can affect the structure and function of the heart. Approximately 1% of infants born in the United States have CHDs. A baby’s heart begins to develop at conception, but is completely formed by eight weeks into the pregnancy. CHDs occur during this crucial first eight weeks of the baby’s development. Specific steps must take place in order for the heart to form correctly. Often, CHDs are a result of one of these crucial steps not happening at the right time, leaving a hole where a dividing wall should have formed or a single blood vessel where two ought to be, for example.

Some CHDs are known to be associated with genetic disorders, such as Down syndrome, but the cause of most CHDs is unknown. In these cases, doctors generally assume the cause is some mixture of environmental and inherited (genetic) factors.

Common types of congenital heart defects, which can affect any part of the heart or its surrounding structures, include:

While CHDs sometimes go undiagnosed for years — even into adulthood — others cause serious symptoms at birth, requiring the infant to be placed in the hospital’s neonatal intensive care unit (NICU) for immediate evaluation by a cardiologist.

Today there are more treatment options for CHDs than ever before, and most defects are treated successfully. If you suspect that your child has a heart defect, the sooner you get medical attention, the better chance your child will have of making the fullest recovery possible.

About Dr. Campbell

Robert Campbell, MD, is chief of cardiac services and director of cardiology at Children’s Sibley Heart Center. Dr. Campbell earned his medical degree from Emory University, where he also completed a residency in pediatrics. He completed a pediatric cardiology fellowship at the University of Michigan C.S. Mott Children’s Hospital.

About the Congenital Heart Center of Georgia

The Congenital Heart Center of Georgia is a collaboration between Children’s Healthcare of Atlanta and Emory Healthcare. The Congenital Heart Center of Georgia is a comprehensive program for children and adults with congenital heart disease that provides a continuum of lifesaving care from before birth through adulthood. It is the first comprehensive congenital heart disease program in the South and one of the largest in the country. The program is led by Emory Healthcare cardiologist Wendy Book, MD, Robert Campbell, MD, chief of cardiac services and director of cardiology at Children’s Sibley Heart Center, and Brian Kogon, MD, chief of pediatric cardiothoracic surgery. To schedule an appointment, please call 404-778-7777.

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What Is Congenital Heart Disease?

Congenital Heart GraphicCongenital heart disease, or CHD, is a broad term that covers a range of conditions present at the time of birth that can affect the structure and function of the heart. CHD is the most common type of birth defect, but thanks to a number of advances in medical and surgical treatment, more and more children with CHD are surviving into adulthood. In fact, according to the Adult Congenital Heart Association (ACHA), there are about one million adults living with CHDs in the U.S.

Some of the most common conditions that cause congenital heart disease include:

As children with CHDs grow into adults, they need ongoing specialty cardiac care. Yet, this high-risk group often experiences lapses in cardiac care due to the perception that they are “fixed” or because they aren’t experiencing symptoms. Moreover, CHDs are so closely associated with infancy and childhood that people often think the conditions just don’t affect adults.

The Congenital Heart Center of Georgia was created to bridge the gap between pediatric and adult care for people with CHDs. If you were born with a CHD and haven’t been evaluated regularly by a cardiologist, you were recently diagnosed with a CHD or you have a child who will be transitioning into adult care in the near future, learn more about the Congenital Heart Center of Georgia and make an appointment today.

About Dr. Book

Wendy Book, MDWendy Book, MD , is the director of the Emory Adult Congenital Heart Center. She has 15 years of experience in adult congenital heart disease, including clinical and research experience. She has a background in heart failure, transplantation and pulmonary hypertension, which complement skills of other Emory Adult Congenital Heart Center physicians. She is board certified in internal medicine, cardiovascular disease, advanced heart failure and transplant cardiology.

About the Congenital Heart Center of Georgia

The Congenital Heart Center of Georgia is a collaboration between Children’s Healthcare of Atlanta and Emory Healthcare. The Congenital Heart Center of Georgia is a comprehensive program for children and adults with congenital heart disease (CHD) that provides a continuum of lifesaving care from before birth through adulthood. It is the first comprehensive CHD program in the South and one of the largest in the country. The program is led by Emory Healthcare cardiologist Wendy Book, MD, along with Robert Campbell, MD, chief of cardiac services and director of cardiology at Children’s Sibley Heart Center. To schedule an appointment please call 404-778-7777.

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Treating Congenital Heart Disease in Adults

Congenital Heart DiseaseDid you know that congenital heart defects affect approximately 40,000 babies each year? And now, due to advances in medicine, many of these patients are living to adulthood and there are estimated to be more than 1 million adults in the United States with congenital heart defects, according to the Centers for Disease Control (CDC).

We strongly recommend that all adults born with a congenital heart defect should have routine follow – up care with a congenital heart specialist in order to ensure the heart is healthy. Conditions can develop later in life that a patient could benefit from additional treatment later. Luckily, not all congenital heart patients have to have surgical or medical treatments – some patients may just need routine monitoring.

Congenital Heart Disease Treatments

For those congenital heart patients who need more advanced treatments your physician will work with you to determine if your condition warrants medical treatment only or if you need more advanced surgical treatment.

Medical Management of Congenital Heart Disease

If a patient has an of the following conditions, preventive care and medical management of the congenital heart disease may be sufficient to keep the heart healthy:

If the congenital heart defect is more serious, surgical or interventional treatment may be required such as:

  • Heart Transplant
  • Pulmonary Valve Replacement
  • Valve Repair and Replacement
  • Septal Defects
  • Congenital Structural Heart Interventions

If you were born with a congenital heart defect it is important to find a physician who has specialized training in congenital heart disease. These physicians have specialized training and experience to deal with the complexities of congenital heart disease. Emory recently partnered with Children’s Healthcare of Atlanta to form the Congenital Heart Center of Georgia that offers congenital heart care from birth until late life. Physicians at the Congenital Heart Center of Georgia have years of dedicated experience on patients with CHDs and will work with the team of physicians across CHOA and Emory to develop a treatment plan that best meets your needs.

About Dr. Sahu

Anurag Sahu, MDAnurag Sahu, MD is an Assistant Professor of Medicine at Emory University School of Medicine and is the Director of the Cardiac Intensive Care Unit at Emory University Hospital. He also specializes in cardiac MRI and cardiac CT imaging with specific training imaging of adults with congenital heart disease. He is Board Certified in Internal Medicine, Cardiovascular Medicine, Nuclear Medicine, Cardiovascular CT and Echocardiography. He has 4 years of adult congenital heart clinical and research experience.

About the Congenital Heart Center of Georgia

The Congenital Heart Center of Georgia, a collaboration between Children’s Healthcare of Atlanta and Emory Healthcare, is one of the largest programs in the U.S.—and the only one in Georgia—specializing in the treatment of children and adults with congenital heart disease (CHD). The team, led by Wendy Book, M.D., Robert Campbell, M.D., and Brian Kogon, M.D., provides individuals with congenital heart disease appropriate lifelong care from before birth through adulthood. To schedule an appointment please call 404-778-7777. Find more information about this unique partnership by visiting congenitalheartgeorgia.org.

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Emory Adult Congenital Heart Center Treatments

Emory and Children’s Healthcare of Atlanta Partner to Form Georgia’s First Comprehensive Congenital Heart Center

We are excited to announce the launch of the Congenital Heart Center of Georgia, collaboration between Children’s Healthcare of Atlanta and Emory Healthcare. The Congenital Heart Center of Georgia is a comprehensive program for children and adults with congenital heart disease (CHD) that provides a continuum of lifesaving care from before birth through adulthood. It is the first comprehensive CHD program in the South and one of the largest in the country.

The program is led by Emory Healthcare cardiologist Wendy Book, MD, along with Robert Campbell, MD, chief of cardiac services and director of cardiology at Children’s Sibley Heart Center.

Not too long ago, most babies born with serious heart defects died in childhood. Thanks to advances in cardiac care, many patients with congenital heart defects are able to live well into adulthood. However, as adults, they need ongoing, specialized care that a practice like the Congenital Heart Center of Georgia can provide.

Even if a person born with a congenital heart defect is not experiencing symptoms, he or she should continue to receive regular, ongoing medical management. Recent research shows that 40% of people between 13 and 21 with congenital heart defects discontinue care for their heart condition. The newly formed Congenital Heart Center of Georgia will help patients make a seamless transition from pediatric to adult care, as well as make sure they benefit from the latest medical research and receive the most appropriate treatments available.

For more information about the Congenital Heart Center of Georgia, please visit www.congenitalheartgeorgia.org.

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Dr. Wendy BookAbout Wendy Book, MD
Dr. Book is a professor of medicine at Emory University School of Medicine and a cardiologist at Emory Healthcare. She specializes in cardiology, internal medicine and transplantation and is the director of the Emory Adult Congenital Heart (EACH) Center. Her areas of clinical interest include congenital heart disease, pregnancy in women with heart defects, heart failure and cardiac transplantation. Dr. Book has been practicing at Emory since 1998 and is highly regarded by her patients and colleagues.