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Growing Up With Congenital Heart Disease (Dr Zahka 2 18 10)

February 18, 2010

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Introduction

Cleveland_Clinic_Host: According to the American Heart Association, about 40,000 children are born with heart defects in the United States each year. Cleveland Clinic Children's Hospital's Center for Pediatric and Congenital Heart Diseases has an outstanding reputation for successfully handling the most complex cases of heart disease in children, and serves as a worldwide referral and second opinion center for patients of all ages with pediatric congenital heart disease (CHD).

Cleveland Clinic Children's Hospital physicians will provide your child with the best care available for heart problems. Most heart disorders are congenital, meaning they are present at birth. Our Children's Hospital uses several specialized techniques to treat pediatric congenital heart disease, such as pediatric aortic stenosis, pediatric aortic valve repair and other surgical procedures like a Fontan operation./

Because heart defects are relatively rare, it is crucial to choose a multispecialty medical center with a highly skilled and experienced medical team. At Cleveland Clinic Children’s Hospital our physicians can diagnose heart disease in children and determine management strategies before they are even born. Complicated and high-risk pregnancies are expertly managed within our Level III Perinatal center, and critically ill newborns receive the highest level of care available in our Level III neonatal intensive care unit. At our Children’s Hospital we want kids with congenital heart disease to be able to participate as fully as they can in life. With a good understanding of their particular defects, Cleveland Clinic Children’s Hospital can ensure this is possible.

Dr. Zahka works with cardiologists in the Middle East, Kenya, Armenia, Russia and Ecuador. He is consistently recognized as one of the Best Doctors in Cleveland, Ohio. Dr. Zahka is a Professor of Pediatrics at Case Western Reserve University School of Medicine and a consultant for the Food and Drug Administration. He specializes in Marfan Syndrome, Ehlers-Danlos Syndrome, Hypertrophic Cardiomyopathy, Familial Aortic Aneurysm, Mitochondrial Disease, Exercise Physiology, Cardiovascular Sports Medicine and Adult Congenital Heart Disease.

To make an appointment with Dr. Zahka or any of the other specialists in our Cleveland Clinic Children’s Hospital, please call 216.444.KIDS (5437) or call toll-free at 800.223.2273, ext. 45437. You can also visit us online at my.clevelandclinic.org/childrens_hospital/default.aspx .

Welcome to our Online Health Chat with Dr. Zahka. We are thrilled to have him here today for this chat. Let’s begin with the questions.


Overview

Y2K2000: What is congenital heart disease? What causes it? Who can get it?

Speaker_-_Dr__Kenneth_Zahka: Many heart problems in children are due to abnormalities that occur as the heart is forming in the womb. These are called “congenital heart defects” and can be as simple as a hole between the heart chambers or an abnormality of the heart valves.

Some children are born with more serious and complicated heart defects which can require treatment in the first hours or days of life. We do not know the reason for most of these defects. They are not typically the result of genetic or environmental problems.

In about 25% of children there are other medical problems including chromosome abnormalities such as Down syndrome.

hh00987: Are there other types of heart problems that my child can develop, even if he/she was not born with a congenital heart defect?

Speaker_-_Dr__Kenneth_Zahka: Some heart defects may be first discovered at an older age, including in adolescents and young adults. Infections and inflammation of the heart occur rarely but can cause important muscle and valve leakage. Genetic heart problems of the heart muscle may be diagnosed at any age. If other family members have heart muscle problems “cardiomyopathy” children may be diagnosed with the same problem either by ultrasound tests or genetic tests. Heart rhythm problems are similar to those seen in adults, including rapid or irregular heart beats.

chadh02: Are there any neurological or cognitive issues associated with children with congenital heart problems?

Speaker_-_Dr__Kenneth_Zahka: The answer to your question has 2 parts. There are some children born with medical issues, including neurological, in addition to their heart defect. Some of these we can easily predict and others require careful testing prior to any treatment. The surgical and cardiac catheterization techniques for treating heart defects have evolved particularly over the last 20 years. There has been increasing interest in the impact of our treatments on the developing brain.

ConcernedAunt: My brother was told his daughter will need a heart transplant. Can you provide me with more information about what this will entail?

Speaker_-_Dr__Kenneth_Zahka: The assessment of children for heart transplantation and their management for transplantation requires a dedicated team that is limited to a small number of centers across the United States.

My best advice is to listen to the transplant team and they will guide you through the entire process.

kittiekat: Can heart problems be detected in my unborn baby?

Speaker_-_Dr__Kenneth_Zahka: Many heart defects and heart rhythm problems can be detected either by screening ultrasounds or by a specialized focused ultrasound of the heart called a “fetal echocardiogram”

brown_keith: Are there other types of heart problems that my child can develop, even if he/she was not born with a congenital heart defect?

Speaker_-_Dr__Kenneth_Zahka: Heart muscle problems can develop as children grow. Some children can get infections or inflammation of the heart. Heart rhythm problems can occur at any age.

PRD_897: Can "minimally invasive" heart surgery be performed on children?

Speaker_-_Dr__Kenneth_Zahka: Many heart defects can be treated by heart catheterization procedures or minimally invasive procedures.

rain_or_shine: My niece was born with a congenital heart problem that was fixed with surgery as an infant (a missing tricuspid valve), will she be looking at more surgeries as she grows older and the heart grows bigger? Is this common in congenital heart problems?

Speaker_-_Dr__Kenneth_Zahka: The devil is in the details. If the tricuspid valve is absent, ("tricuspid atresia") or is markedly abnormal and leaking ("Ebstein") the treatments can be quite different. In general, follow-up visits with the cardiologist will help define if further procedures are needed.

praying: When is the best time to discuss my son's illness with him? He is about 4 years old and takes his appoints and health regimen in stride, but when and how best do we discuss with him what his illness is going to mean to him throughout his life? Are there people or resources to help with this kind of thing?

Speaker_-_Dr__Kenneth_Zahka: You know your child best. I enjoy talking to the children directly, no matter what their age. I am impressed by how much they can understand.

holding_on: What are your recommendations on having pets? My son recently had endocarditis. My older daughter really wants a dog, which I have no problem with, but I don't want to chance anything with my son. Thanks for any advice.

Speaker_-_Dr__Kenneth_Zahka: I got my first dog 7 years ago. I now cannot imagine not having a dog. It will be great for your family and should not be a problem for infection.

carrieO: My daughter will be starting preschool next year. I will be registering her in about 2 weeks. She had a mitral valve replacement. Do you have any suggestions on putting together an action plan to give the school, and do find schools generally compliant and willing to work with the students and their parents, in regards to their illness?

Speaker_-_Dr__Kenneth_Zahka: I would work with your daughter's cardiologist in helping to reassure the school about her heart problem and what physical or academic accommodations might be needed to ensure her success. As she goes through the education process, I am a big advocate of having a low threshold for identifying any special academic needs she might have and addressing those early.

Mommy_1999: My daughter was born with a hole in her heart. Since then she has become a very picky eater. How can I improve her eating habits to be heart healthy?

Speaker_-_Dr__Kenneth_Zahka: Some infants with large holes between the pumping chambers “VSD or ventricular septal defect” can have trouble with feeding and growth, but they are not typically picky eaters. A normal diet should be perfect for nearly all children including those with holes.

brundan: What are the medicine restrictions for children with congenital heart conditions? What cold medicine and pain reliever is recommended? My son is 9

Speaker_-_Dr__Kenneth_Zahka: The restrictions on medications are usually very specific for any giving heart defect. Over the counter pain relievers are generally well-tolerated unless the children are also on blood thinners. Cold medications are controversial. Many pediatricians believe they are of modest help. Children with some heart defects should avoid cold medications containing stimulants. The most controversial medications are the ADHD medications and these should be discussed with your child's cardiologist.

careful: My child's INR levels have been unstable for the past 2 months. What causes this and what I can do to help stabilize them again (they were stable for the 6 months before this)?

Speaker_-_Dr__Kenneth_Zahka: This is a remarkably common challenge in children. You are likely already aware of the impact of diet and other medications on the INR measurements. Sometimes there are also fluctuations in the measurements and we try to ride out some of these fluctuations. Anticoagulation can have complications and you should work closely with your provider to try to keep her in an appropriate range.

tkb_333: What are other sources for good information on heart disease in children?

Speaker_-_Dr__Kenneth_Zahka: Your local pediatric cardiologist is the best resource to tell you exactly how a particular diagnosis or problem impacts your child.


Kawasaki Disease

MomSquadRichmondHts:I was told that my daughter has Kawasaki Disease. What does that mean? How serious is it? Will she get better and lead a normal life?

Speaker_-_Dr__Kenneth_Zahka: Kawasaki disease is named after the Japanese doctor who first recognized that infants who had prolonged high fevers, a distinctive rash, infected eyes and swollen glands could also have enlargement of the coronary arteries. It is an inflammation of the body that particularly affects the heart for which we do not yet know the cause. It is now treated effectively by gamma globulin and nearly all children heal uneventfully.


Hypoplastic Left Heart

cmazumdar: My cousin is expecting a son soon, she is 8 months pregnant and the growing baby is been diagnosed with HLHS (hypoplastic left heart).

Speaker_-_Dr__Kenneth_Zahka: Your cousin has likely already learned much about this serious heart defect. Over the last 2 decades the hope for a good long term quality of life for a child born with HLHS has dramatically improved. There are a number of centers across the US who have had excellent results with the surgery for this challenging problem.


Chest Pain

Buzzybee:My 11-year-old complains of chest pain when she plays field hockey. Do I need to take her to a heart specialist? What could be causing her chest pain?

Speaker_-_Dr__Kenneth_Zahka: Chest pain with activity, especially during vigorous athletic activity rarely is a clue to an important heart problem of either the heart muscle or the coronary arteries.

While the vast majority of athletes with symptoms are normal, chest pain does warrant a closer evaluation by the primary care doctor or a cardiologist.


Marfan Syndrome

Tulip_104: How is Marfan Syndrome diagnosed? What types of doctors treat Marfan Syndrome? And, what treatment options are available for children?

Speaker_-_Dr__Kenneth_Zahka: Marfan syndrome is one of the genetic “connective tissue” diseases. These are caused by genetic changes in the tissues that provide strength or structure to all parts of our bodies. Children with Marfan syndrome can be identified by characteristic changes in the bones, heart, eyes, skin and can often be confirmed by specialized genetic testing. New medical and surgical treatments now offer great hope to help the changes in the arteries and valves.


Ehlers-Danlos Syndrome

Stony007: What is Ehlers-Danlos Syndrome? What medical problems are associated with EDS in kids?

Speaker_-_Dr__Kenneth_Zahka: EDS is one of the other connective tissue diseases. There is a broad variety of features. Most children are very loose jointed and they can be troubled by rapid heartbeats when they stand.

Heart Defects and Exercise

FitnessFirst: My son is a talented athlete but he has a heart murmur. What strength-training exercises would you recommend?

Speaker_-_Dr__Kenneth_Zahka: Most heart murmurs are caused by normal blood flow in healthy arteries, not by holes blockages or leaks. Strength training can transiently markedly increase the blood pressure and is not advised for adolescents with some heart muscle and artery problems.

Smith_Barney: Why would a child need an exercise stress test? When should I consider sending my child to a cardiovascular sports medicine specialist?

Speaker_-_Dr__Kenneth_Zahka: Exercise testing can be an invaluable part of the assessment of children and adolescents with heart defects, both before and after surgery or catheterization procedures.

Sophisticated sports medicine cardiopulmonary exercise testing is also helpful in understanding the wide variety of symptoms in healthy athletes.


Surgical Repair for Congenital Heart Defects

SarahH: What is your preference in repairing a VSD, Catheterization or surgery? The child is 18 months old.

Speaker_-_Dr__Kenneth_Zahka: The vast majority of defects are repaired surgically. There are a small number of children for whom device closure is appropriate.

Cars_2901: Can you please discuss the Fontan procedure? My grandson will be having it done tomorrow and I would like a little more information.

Speaker_-_Dr__Kenneth_Zahka: The Fontan operation is named after the French surgeon Francois Fontan who in the late 60s demonstrated that it was possible to connect the veins coming back from the body directly into the lungs, bypassing the need for a pumping chamber. The operation has become an important part of the treatment of children with heart defects where one of the 2 pumping chambers did not form properly.

ComeOn: At what point is a Ross procedure considered?

Speaker_-_Dr__Kenneth_Zahka: The Ross procedure is one of the treatments for children with blockage or leakage of the aortic valve, the valve guiding the blood flow to the body. The Ross procedure uses the valve to the lungs, the pulmonary valve to replace the aortic valve and an artificial valve is used to replace the pulmonary valve.

LMN4020:The doctor said my baby boy’s heart has only one ventricle instead of two and no blood is flowing from the heart to the lungs. I was told they will have to do three operations. The last one called a Fontan Procedure. What does that mean? Can you explain why my baby needs all these surgeries?

Speaker_-_Dr__Kenneth_Zahka: Hypoplastic left heart syndrome is a life-threatening congenital heart defect which requires a number of surgeries to help the heart function adequately to meet the child’s needs for activity and growth.

Each stage is named after the surgeon who first pioneered that aspect of the operation.

The first operation is called a “Norwood or stage 1 palliation”, the second a “bidirectional Glenn” and the final stage is a “Fontan operation”

Each operation has gone through a number of refinements over the last 20 years and the combination of surgeries remain among the most complicated and challenging treatments for children with heart defects.


Finding the Right Doctor

marymount17:What tests might my child need if seen by a specialist in Pediatric Cardiology?

Speaker_-_Dr__Kenneth_Zahka: One of the most important parts of the assessment is a careful medical history and physical examination. We often do electrocardiograms to check the heart rhythm and echocardiograms (ultrasound) to check the heart size, muscle and valves.

Other children may benefit from various heart monitors for the heart rhythm, exercise testing, MRI scans or heart catheterization.


The Genetics of Congenital Heart Defects

newtonm: My father had ventricular fibrillation and died at around age 50. His father had the same problem and died at about the same age. He was told the condition was undiagnosed as a child. Now my father was a heavy smoker and was overweight. As there is a definite family history, what should I be concerned with for my two sons? Our pediatrician knows about the history of heart problems, but it was only within the past month that I found out the details. The pediatrician has never shown any concern in regards to this and my sons are healthy. Should I have them checked further or would our pediatrician have picked this up if there was a problem? What problems should my sons be aware as they get older? What exactly is ventricular fibrillation and how does it present itself in a child?

Speaker_-_Dr__Kenneth_Zahka: This is an important and common question. The best answer is to know the exact diagnosis in the parent or grandparent. I would start by asking their physician "Why did my father or grandfather have ventricular fibrillation?". If that question could be answered, then your pediatrician, a geneticist or cardiologist interested in genetic diseases of the heart could help you answer the question for your sons.

blander: What would lead you to suggest someone or a family consider genetic counseling and do you base treatment plans based on the results? A friend I met in a support group took her family and found a serious defect in her husband and 3 kids.

Speaker_-_Dr__Kenneth_Zahka: Advances in genetic testing have provided many opportunities for earlier diagnosis before symptoms or findings. Common reasons for considering genetic testing are concerns about heart muscle (cardiomyopathy) or heart rhythm (long QT) problems, as well as connective tissue problems such as Marfan syndrome. It is important to consider how the test results will impact the child if they are otherwise healthy. I would speak with a geneticist or a cardiologist with specific experience in genetic disease.


Closing

Cleveland_Clinic_Host: I'm sorry to say that our time with Kenneth Zahka, MD is now over. Thank you again Dr Zahka for taking the time to answer our questions about Growing Up with Congenital Heart Disease.

Speaker_-_Dr__Kenneth_Zahka: Thanks for having me. I enjoyed "speaking" with you today!

Technology for web chats paid in part by an educational grant from AT&T Ohio and the AT&T Foundation (formerly SBC).

Reviewed: 02/10

This information is provided by Cleveland Clinic as a convenience service only and is not intended to replace the medical advice of your doctor or health care provider. Please consult your health care provider for advice about a specific medical condition. Please remember that this information, in the absence of a visit with a health care professional, must be considered as an educational service only and is not designed to replace a physician's independent judgment about the appropriateness or risks of a procedure for a given patient. The views and opinions expressed by an individual in this forum are not necessarily the views of the Cleveland Clinic institution or other Cleveland Clinic physicians.

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