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Ask the Pediatric Heart Doc

Online Health Chat with Dr. Gerard Boyle

June 10, 2011


Introduction

If your child has been diagnosed with a heart condition, it can be a scary and emotional time. As a parent, you likely have many questions and concerns about your child’s diagnosis, and the best treatment and services available. Cleveland Clinic Children's Hospital’s pediatric heart surgeons, cardiologists, and anesthesiologists are among the most highly trained and experienced in the world. The team is the largest and most experienced in Northern Ohio. In addition to our clinical specialists, we rely on the entire pediatric team to ensure the very best results for our child and adolescent patients. That team includes the referring physician, the patient's family, specially trained cardiac nurses, allied health professionals, social workers, and child life specialists.

Our pediatric cardiac surgeons manage all forms of heart disease in children, including heart and heart/lung transplants not performed elsewhere. We routinely perform the most complex surgeries, such as repair of tetralogy of Fallot, transposition of great arteries, the Norwood procedure, and the Fontan procedure. Surgical intervention for rhythm disturbances, found in a relatively high percentage of adults with congenital heart disease, is a particular interest of the pediatric cardiac surgeons.

Cleveland Clinic Children’s Hospital cardiologist Gerard Boyle, MD, is Chair of the Department of Pediatric Cardiology and Medical Director of Pediatric Heart Failure and Transplant Services. He is an Associate Professor of Pediatrics at the Lerner College of Medicine of Case Western Reserve University in Cleveland. Dr. Boyle’s areas of specialization are pediatric heart transplantation and congestive heart failure. He is certified by the American Board of Pediatrics and the sub-specialty Board of Pediatric Cardiology.

Dr. Boyle received his medical degree with Distinction in Research from the State University of New York, College of Medicine in Brooklyn. He completed his residency in Pediatrics and a fellowship in pediatric cardiology at Children’s Hospital of Pittsburgh, and subsequently advanced to Associate Professor of Pediatrics at The University of Pittsburgh School of Medicine.

His research has been extensively published in peer-reviewed medical journals. He has been listed as Best Doctor in America (2003-Present) and among America’s Top Cardiologists since 2006. Dr. Boyle is a member of numerous national and international professional societies, including the American Heart Association, the American College of Cardiology, the Heart Failure Society of America, and the International Society for Heart and Lung Transplantation, among others. Regionally, he is a member of the Northern Ohio Pediatric Society and serves on the board of trustees of the Ohio Chapter of the American College of Cardiology.

Cleveland_Clinic_Host: It’s now easier than ever to schedule your appointment with Dr. Boyle or any of our Children’s Hospital pediatricians or pediatric subspecialists. Chat live with an appointment scheduler by visiting our on-line appointment page my.clevelandclinic.org.

Our representatives are available to schedule your appointment Monday through Friday from 10 a.m. to 2 p.m.


Cleveland_Clinic_Host: Welcome to our Online Health Chat with Dr. Gerard Boyle, pediatric cardiologist at Cleveland Clinic Children's Hospital. We are thrilled to have him here today for this chat. Let’s begin with some of your questions.

truly: What does it mean if my son has an "innocent" heart murmur?

Dr__Gerard_Boyle: "Innocent" murmurs are present in almost all children at some point during their development. Innocent really is innocent in this case. In fact, as children grow, their hearts have more work to do than yours or mine. They have to supply blood for living and playing, the same as for you or me, but they also have to supply the energy for growth. When doctors listen to hearts, we place the stethoscope directly over the heart. In children, the heart is closer to the stethoscope than in adults. Therefore, we are able to hear more. We can often hear the loud rushing through the heart on its way to the lungs or body.


Congenital Disorder

castile946: My grandson was born with an open vessel. He has been seen by a pediatric heart doctor who said right now it is not an area of concern. We were told early on it would probably close on its own, but it has not. He is now 8 years old. I'm wondering if this is something to worry about. He is very active -- soccer, football, etc. -- but he tires very easily, sometimes for no apparent reason, and he has been short of breath on occasions. Should we worry?

Dr__Gerard_Boyle: This is a difficult question to answer with the available information. I must assume you are talking about a patent ductus arteriosus. This is a vessel that connects the pulmonary artery (artery to the lungs) with the aorta (the vessel that carries blood to the rest of the body). This vessel is essential during development of the fetus, but should close shortly after birth. The question of whether you should be concerned and whether your grandson’s symptoms are related to this vessel not closing depends on how large it is. If it has closed most of the way and only a little blood flows through it, then it should not be the cause of shortness of breath or tiring easily. If it is larger, then it can definitely be a problem and should be addressed. In either case, if it is still open, thought should be given to closing it, as it presents a small but real risk of infection. Of course, this may not be the vessel his doctor is talking about, but it is my guess that it is.


Hypoplastic Left Heart Syndrome (HLHS)

pwodzisz: My daughter has HLHS and is considered pretty underweight. We try to get weight on her, but I am wondering if that is a double-edge sword. I would think it would be 'better' for her to be small, to not have the extra weight put a strain on her heart. Developmentally, she is now right where she is supposed to be at almost 2 years old.

Dr__Gerard_Boyle: You would think that adding weight would place more strain on the heart. However in this case, think of it as providing more fuel for the heart to use in times of need, which – with this condition -- is often the case. Your doctors are also not asking for weight gain for the sake of the weight. Weight, growth, and development go hand in hand. Also, the surgeon’s job is made easier, and he or she can attain the best results when a child is a little bigger. The heart structures are bigger and the surgeons have more to work with. The final benefit is that with a little extra weight, recovery is a little smoother, as the body has the energy needed to heal itself and fight infection.

judith_s_mom: My daughter is 12. She has HLHS, but is going really well, which is encouraging. However, she does get tired easily and wants to take part in sports competitions, even though her cardiologist says no competitions. She's becoming a teen, and I have the impression she's just ignoring her heart condition, forgetting to take her aspirin, etc. She wants to go to an adventure camp during the summer break, which we will allow her to do because we don't want her to feel any different. But she is, of course. How do we move forward, allowing her to live a full and happy life, while being cognizant of her condition?

Dr__Gerard_Boyle: I understand your desire to provide her with a normal life more than you can imagine. However with teens, a long healthy life is not something they concern themselves with. In any risk versus reward situation, they will almost always choose risk, as NO teen believes they are mortal.

Your doctors are correct in recommending against competitive sports for the most part. Encouraging your child to be normal is also something you should do, but with an eye to the future as well. Guiding your children to appropriate athletic endeavors is your job. There are more wealthy and successful golfers in the world than any other sport. Go that direction and you will never be wrong. Adventure camp can be risky. A patient with Fontan physiology cannot afford to become dehydrated, especially if they "forget" to take their aspirin. There are camps with normal activities, such as boating, fishing, hiking etc., but run by medical professionals, including pediatric cardiologists, to deal with emergencies. Look into the Hole-in-the-Wall Association of camps founded by the actor Paul Newman.


Valve Regurgitation

andrew22: My daughter has HLHS, and she has had her final surgery, the Fontan procedure. After her echocardiogram, they referred to mild leaking of the tricuspid valve. Is this common?

Dr__Gerard_Boyle: It is not uncommon for the tricuspid valve to leak in this situation. In fact, the tricuspid valve leaks a little in many "normal" hearts. With HLHS, however, tricuspid regurgitation (leaking) can be more of a problem if it progresses. Mild leaking should not be a problem and does not necessarily progress to moderate or severe. In fact, most often it does not.

bethanne: What exactly is tricuspid valve regurgitation? How is it treated, and is it life-threatening? A friend of the family’s daughter was recently diagnosed.

Dr__Gerard_Boyle: Tricuspid regurgitation is a leaking of the valve between the upper and lower chambers on the right side of the heart. As blood returns from the body depleted of oxygen, it needs to go to the lungs to pick up more oxygen. The blood collects in the upper chamber, the right atrium, and stays there for half a heartbeat. It then travels through the tricuspid valve to the right ventricle -- the pumping chamber -- which sends the blood to the lungs to pick up that oxygen. If there were no tricuspid valve, the blood would just slosh back and forth between the chambers of the heart. Leakage of this valve is, however, both common and well-tolerated. If the leak is severe, it may cause a person to fatigue easily. When this is the case, it may need to be repaired surgically; however, this is rare. Tricuspid regurgitation is not a life-threatening condition.


Surgery

pwodzisz: Your answer helped a lot. Now, we are thinking the Fontan procedure is in the future, and I am wondering about the difference between the lateral tunnel and the extracardiac. Is there one that is better than the other, or is it specific to the anatomy of the child? I have read that weight is also a concern, and my fear is that my daughter will be 5 before she hits the magic 30 pound mark. Is this an arbitrary weight or have you just seen better results when patients reach that weight?

Dr__Gerard_Boyle: This is a question of fluid mechanics. The lateral tunnel is a good approach, but there is some loss of energy if and when the wall of the right atrium -- which is incorporated into the tunnel -- stretches. There is also the fact that the tunnel surgery places more stitches in the heart and can cause more rhythm problems later in life. The extracardiac conduit is a rigid Gore-Tex® tube that transmits energy better and, therefore, more efficiently delivers blood to the lungs. It has the added advantage of putting fewer stitches in the heart.

The age of 5 is a target, as is the weight of 30 pounds. Both are somewhat negotiable. The most important factor is size of the child and whether your surgeon feels he or she can get the appropriate sized tube into your child's chest when the surgery is performed. There are some factors that make age and weight non-negotiable, and your doctor is the one who knows that best.

eric_O: What are the success rates for surgery for sinus venosus defects, and is there a significant risk for any post-operative complications? I've heard it mentioned there may be a need for a pacemaker. How and when will we realize that?

Dr__Gerard_Boyle: Sinus venosus surgery is pretty well developed, and the success of that surgery is excellent in most surgeons’ hands. The risk of post-operative complications is small and the same for most heart surgeries, which are relatively uncomplicated as is the case here. The chance of needing a pacemaker is small but real. The issue is that the heart’s natural pacemaker, the sinus node, is right in the area of the repair. There is always some variation in the heart’s anatomy (otherwise there would be no sinus venosus defect). In some cases, the sinus node is right in the way of the repair. Injury to this structure might be unavoidable. This injury is what would lead to needing a pacemaker, and the surgeon should know either during the surgery or shortly afterward if a pacemaker is needed. After recovery, the need for a pacemaker lessens considerably.


Bicuspid Aortic Valve

Sept14: I am a 36-year-old father of two, and I underwent surgery last fall for a 5.0 ascending aortic aneurysm, as well as replacement of a bicuspid aortic valve. My two daughters (ages 3 years and 6 months) have each received an echocardiogram and neither has a bicuspid valve. However, I have read a few medical studies suggesting that first-degree relatives of bicuspid valve/aneurysm patients have a tendency to develop an aneurysm, even in the absence of a bicuspid valve. Please discuss how prevalent this is among children of bicuspid/aneurysm patients and to what extent they should be monitored during childhood (for instance, echocardiograms every few years?) to ensure an aneurysm doesn't develop unnoticed. Or do aneurysms in first-degree relatives typically only develop post-childhood?

Dr__Gerard_Boyle: Aortic aneurysms are extremely rare in children with bicuspid aortic valves. The association between bicuspid aortic valves and aortic aneurysms is also rare. It is difficult to answer with any certainty whether your children are at risk for developing aneurysms in the absence of a bicuspid valve. I think there would need to be another underlying disease process, such as Marfan syndrome, for them to be at risk. I think they are safe for now, but I would recommend repeating their echocardiograms in five years and then again after they have finished their growth spurts and are in their late teens.

Sept14: In the absence of Marfan syndrome or other underlying disease, to what extent has bicuspid aortic valve been shown to be hereditary? If a bicuspid patient's children do not have bicuspid, are the children's children still more at risk than the general population?

Dr__Gerard_Boyle: The answer, as best we can tell, is no. Your grandchildren should not be at increased risk. The risk of some form of congenital heart disease is less than one in 100 live births. If the father has a congenital defect, the risk is increased to his children somewhere between 2 percent and 10 percent. However, the next generation does not seem to be at increased risk.


General Questions

mom_to_be: I am eight weeks pregnant and my child's father has Marfan syndrome. I know it is hereditary except, in his case, it was a mutation. I was wondering if you knew what chance our baby has of getting it, and if we are going to have to see a geneticist, or what we should expect as far as having a healthy pregnancy and baby.

Dr__Gerard_Boyle: Since the child's father has a mutation, it is the same as having the hereditary form, as it is now in his genes and can be passed along. You should see a geneticist and a genetic counselor to be safe.

kmch_4_22: How long does a child who had heart surgery (as an infant) have to be followed up? Will he need to be evaluated by a cardiologist and be worried about something else happening for the rest of his life? He is very healthy and normal now at age 8.

Dr__Gerard_Boyle: The length and frequency of follow-up depends on the type of defect. Most often, when a child needs surgery to correct a heart defect, they will need long-term follow-up with a cardiologist.

worried_parents: What should we expect for home care after the hybrid procedure? We know that he'll be on medicines and an NG tube. What else should we expect?

Dr__Gerard_Boyle: I am sure you will be in frequent contact with your doctors and their nursing team. The hybrid procedure is a way to stabilize a child with HLHS until he is older and bigger and ready for the next stage of the surgery -- and so that surgery will be successful. Babies who have had this procedure really do quite well at home as long as they continue to gain weight and are closely followed by their team.


Closing

Cleveland_Clinic_Host: I'm sorry to say that our time with Dr. Gerard Boyle is now over. Thank you again Dr. Boyle for taking the time to answer our questions about pediatric heart conditions.

Dr__Gerard_Boyle: Thank you for these excellent questions. I do hope I was able to answer them to your satisfaction and understanding.


More Information

To make an appointment with Dr. Boyle or any of the pediatricians or pediatric specialists at Cleveland Clinic Children's Hospital, please call 216.444.KIDS (5437) or call toll-free 800.223.2273, ext. 5437. You can also visit us online at www.clevelandclinicchildrens.org

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This chat occurred on June 10, 2011

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