Posts Tagged ‘adult congenital heart disease’

Congenital Heart Disease: Staying in Specialty Care Saves Lives

Congenital Heart DiseaseCongenital heart defects (CHD) are the most common type of birth defect, affecting approximately 8 per 1000 births in the US. The severity of these defects ranges from mild defects that don’t require surgery to critical heart defects that require surgery within the first year of a newborn to survive.

Advances in medical and surgical care have significantly improved survival for all CHD, even the most complex, severe defects. As a result of these advances, the majority of children born with a heart defect now survive to adulthood. The number of adults with congenital heart defects exceeds the number of children with CHD.

Despite these childhood successes, many adults with congenital heart disease face late complications, hospitalizations, need for medications, future surgeries, and may die at a younger age than their counterparts without a heart defect. The surgeries that permitted childhood survival often are a repair, rather than a “cure.” For this reason, those born with congenital heart defects require ongoing regular specialty care across the lifespan.

Unfortunately, some patients and their providers have the perception that the heart defect has been “cured.” The gaps in care resulting from this misperception can be harmful. Guidelines recommend that all adults with congenital heart defects stay in regular cardiology care, and those with moderate to complex (more severe defects) should receive care in an Adult Congenital Heart Center.

A recent publication showed that adults with congenital heart defects who receive care in an ACHD specialty center do better than those who receive non-specialty care, or receive no care at all. Those with more severe defects have the most to gain from specialty care. Unfortunately, less than a third of the patients who need this life-saving specialty care actually receive care from an ACHD Center.

So what’s so special about an ACHD center?

  • Practice makes perfect. High-volume specialized centers improve patient outcomes by increasing physician experience, skill, and coordinated specialty teams.
  • Multidisciplinary teams work together to provide optimal care.
  • New and novel interventional and surgical techniques are developed at the centers.
  • Ongoing research gives patients access to cutting-edge treatments.
  • Resources are more readily available in a specialized center.

About the Emory Congenital Heart Center

The Emory Adult Congenital Heart Center is an internationally recognized cardiology service that specializes in the care of adults with congenital heart defects. Emory’s adult congenital heart program is the only adult congenital heart disease (ACHD) program in the state of Georgia and is one of the largest programs in the country. Physicians at Emory’s Adult Congenital Heart Center have additional specialty training, beyond cardiology fellowship, in the diagnosis and management of an adult with congenital heart defects.

Our Physicians

or call: Emory University Hospital at 404-778-5545 & Emory Saint Joseph’s Hospital at 404-778-6070

About Dr. Wendy Book

Wendy Book, MD

Wendy 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.


Related Links

Takeaways from Dr. Jokhadar’s and Dr. Sahu’s Congenital Heart Disease Chat

congenital-heart-chat-emailThanks to everyone who joined us Tuesday, July 14, for our live online chat on “Congenital Heart Disease – Even Adults Need Special Care”. We were fortunate to have Dr. Maan Jokhadar and Dr. Anurag Sahu available to answer your questions during this chat.

If you are an adult who was treated for Congenital Heart Disease as a child, it’s important to have regular cardiology care through adulthood. An adult congenital heart specialist can monitor your health and insure that if any problems arise they are detected early. They can also guide you on lifestyle issues.

Our chat participants submitted good questions about Congenital Heart Disease related to the need for adult follow-up care, diet and exercise guidelines, travel concerns, the risks of pregnancy and more. If you missed this chat, be sure to check out the full list of questions and answers on the web transcript.

Here are just a few highlights from the chat:

Question: I had surgery as a child, did that take care of the heart defect?

jokhadar-maanDr. Jokhadar: Some heart defects are in fact cured with heart surgery. However, most corrective surgeries improve the situation but do not completely cure it. This depends on many factors, including the type of defect and the type of surgery.



Question: Can’t my heart condition be monitored by my Internist during my annual physical?


Dr. Jokhadar: Some heart conditions can be monitored by an internist or general cardiologist. However, this depends on the complexity of congenital heart disease. Follow up should be determined by a specialist while coordinating with the patient’s primary care physicians.


Question: What are activities, food, etc. that should be avoided if you have been diagnosed with congenital heart disease?

Dr. Sahu: In terms of activity, we generally want all of our patients to maintain an active lifestyle. If you have questions about certain activities, you should talk to your congenital heart specialist.In terms of food, strive for a healthy and balanced diet (avoid sugars, fried foods, etc.). If you want a specific type of diet to follow, many cardiologists recommend the Mediterranean Diet as a heart-healthy option. For more on the Mediterranean diet you can check out this blog.


If you have additional questions for Dr. Jokhadar or Dr. Sahu, feel free to leave a comment in our comments area below.


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.

Related Links

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

Related Links

Emory Adult Congenital Heart Center Treatments

News from Emory’s Adult Congenital Heart Center

News from Emory’s Adult Congenital Heart Center

Dr. Wendy BookEmory’s Adult Congenital Heart (EACH) Center was selected as one of 5 centers in the US to participate in an academic-community collaborative education program. The program, called the Provider Action for Treating Congenital Hearts, or PATCH, was designed in collaboration with the Adult Congenital Heart Association (ACHA) and the American College of Cardiology’s Adult Congenital and Pediatric Cardiology (ACPC) Section to address the challenges faced by pediatric and adult cardiology community as more and more patients with congenital heart defects look to them for care.

The program provides a significant opportunity for Emory’s Adult Congenital Heart Center, led by Dr. Wendy Book (Medical Director), Children’s Healthcare of Atlanta, Georgia ACC and the community. With collaborative efforts from the SIBLEY Heart with a special thanks to the hard work of Dr. Robert Vincent (GA ACC, Sibley Heart) and Dr. Michael McConnell.

You may find more information about the PATCH program and the ACHA in our related resources area below.

Centers for Disease Control and Prevention (CDC) Committees

Dr. Wendy Book, Medical Director of Emory’s Adult Congenital Heart Center and cardiologist at Emory University Hospital Midtown, has been asked to serve on the Centers for Disease Control Expert Panel – “Adults with Congenital Heart Disease,” to help guide future public health research in the field of congenital heart disease. Dr. Book will join Dr. Michael McConnell, an Emory Clinic Pediatrician, who also serves on the steering committee.

This is not the first time Dr. Wendy Book has been asked to provide her expertise through CDC programs and events. Dr. Book also serves as a member of Georgia’s Maternal Mortality Review Committee with the CDC. The mission of this committee is to identify and review pregnancy-associated deaths in Georgia and to develop interventions that may reduce maternal deaths.

Related Resources

Balancing Life with Congenital Heart Disease

Until 1960, many people born with moderate and complex forms of Congenital Heart Disease (CHD) didn’t reach adulthood. As people who suffer from CHD age, they may develop health problems that are unique and require special treatment. Consequently, it’s vital that individuals with CHD strive for a healthy balance in their lives. Adults with moderate or complex CHD benefit from regular evaluation at an Adult Congenital Heart Center, especially if they have been out of cardiac care for many years.

If you have heart disease, realize that above all, you are a success and a survivor. Still, living with chronic illness can take a serious toll on you, emotionally and physically. It’s important that you stay as educated and informed about your heart disease as possible.

Regular check-ups with your ACHD doctor may help recognize any issues or problems early before symptoms develop.  Be sure to accept help when you need it, and share you healthcare plans with your friends and family. They, along with your doctors and nurses, can help you to continue your success.

Bear in mind that there are ways for you to stay healthy and live better. Your risks of developing problems with both the heart and other organs may be higher when you have CHD, so it’s crucial for you to maintain a healthy weight, follow a heart-healthy diet plan, stay as active as you can, and have your blood pressure and any needed blood work checked regularly. Your ACHD doctor can devise a plan specific to your needs.

Here are a few more tips that will help to keep you and your heart healthier:

– Get a flu vaccine each year if your doctor advises

– Consider a pneumonia vaccine if your doctor advises

– Take good care of your teeth, take antibiotics before dental visits if your doctor advises you to;

– Discuss any non-cardiac surgery (unless it’s an emergency) with your doctor or cardiologist prior to scheduling it

– Ask your doctor about over-the-counter drugs and herbal supplements before taking any

– Avoid smoking and smokeless tobacco

– Some young adults with CHD need to limit alcohol and caffeine in their diets; check with your doctor to see how alcohol and caffeine may affect you

– Avoid all illicit drugs

Additionally, I highly recommend The Therapeutic Lifestyle Changes (TLC) diet plan—a low saturated fat, low cholesterol diet that helps to reduce your total blood cholesterol as well as your LDL cholesterol levels. The lower your cholesterol levels, the lower your risk is for coronary heart disease. The TLC plan provides fats, cholesterol, carbohydrates, fiber, and protein throughout your daily calorie intake. If your doctor has recommended a low sodium diet, you should follow those guidelines in addition to heart healthy choices with the TLC diet.

Staying physically active is also a key component to maintaining heart health. It’s quite possible to stay active through leisure activities, such as golf, dancing, swimming, cycling, and walking. If you’d like to adopt a more strenuous exercise routine, be sure to discuss it with your doctor first.

Last, when you have CHD, it’s crucial to consider physical limitations when it comes to your career. Learn what your limitations are by speaking with your doctor, and be sure to understand and keep up with your healthcare insurance coverage.

As medical professionals, we’ve learned from history and experience, and are able to help you to be prepared for issues as well as triumphs. However, no one can be sure of what the future holds—it’s important to be prepared and continue to enjoy each and every success. Be proud of what you’ve accomplished so far, and continue to strive to maintain balance among work and play.

About Teresa Lyle, APRN:

Teresa received her Graduate degree from Emory University (Master of Nursing, Adult Health– Critical Care), and attained her Post-Graduate degree from University of Texas at Arlington (Pediatric Nurse Practitioner). Her clinical interests include ACHD, cardiac surgery, transition from pediatric to adult CHD care, pregnancy and planning in women with complex CHDs, and Eisenmenger syndrome/pulmonary hypertension.