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How Christian Captured His Journey for the World to See

When Carvina was pregnant with her son, there were some suspicious warning signs that there could be complications, but she had no idea that her baby would end up at Sibley Heart Center at two days old with a heart murmur and three holes in his heart. At four months old, Christian underwent a cardiac catherization procedure, and at six months old, he had open heart surgery to remove a faulty valve. “As you can imagine, it was nerve-racking as a mom to have all that done at such a young age,” said Carvina, who works at the Spelman College Student Health Services Center. “He was so small.” Christian, now a third-grader at an Atlanta technology magnet school, recently made a video for school that details his journey. Within the first two weeks of third grade, Christian was promoted to the magnet school and gifted program, where he thrives in front of the camera and excels in his studies. “Needless to say, he has quite a personality,” Carvina said. “People tell me I should take him for acting auditions. He’s very bright. His heart problems didn’t affect him in that way at all.” Christian is a long way from those…

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Camp Braveheart Helps Kids Remember They are Not Alone

The first time Camp Braveheart kids see the swimming pool, they may hesitate for a beat. As refreshing as the water looks, it’s a moment of unique vulnerability for a child to reveal the scars of heart surgery. However, when they see all their new friends jumping in, it doesn’t take long for them to realize: I’m just like everyone else here.” And it’s not so scary anymore. “Our campers say that camp is the absolute highlight of their summer,” said Kati Keyes, co-director of Camp Braveheart. “Parents say they love that their kids can just be kids here. It helps them feel less isolated to be around children who are dealing with similar circumstances. That’s what makes camp so special.” Camp Braveheart is held each year in Rutledge, Ga., at Camp Twin Lakes, a network of camps that provides life-changing, therapeutic, recreational and medically-supportive camp experiences for children with serious illnesses, disabilities and other life challenges. The Camp Twin Lakes mission is to teach campers to overcome obstacles while creating shared experiences with other children who face similar challenges. Founded in 1995 by Roger and Kathy Flynn, Camp Braveheart continues today in memory of their daughter Ansley. Camp Braveheart…

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ECHOs and EKGs Reveal Important Information About the Heart

Two of the tools pediatric cardiologists have when they want to gather more information about a child’s heart include the echocardiogram (ECHO) and the electrocardiogram (EKG). Both are noninvasive, painless and quick ways to learn about the heart’s structure and electrical system. ECHO Sibley Heart Center performs about 36,000 transthoracic ECHOs each year. An ECHO uses the same technology used to evaluate a baby's health before birth and is similar to an X-ray, but without the radiation. A hand-held device called a transducer is placed on the child’s chest or on a pregnant woman’s belly and transmits high frequency sound waves, which bounce off the heart structures, producing images and sounds that can be used by doctors to detect heart abnormalities. Children of any age can have an echo performed, and a study can take 30 to 60 minutes to complete, depending on the age of the patient and how comfortable they are in the echo room, said Wesley Blackwood, MD, pediatric cardiologist at Sibley. They do have to lie fairly still for the study,” Dr. Blackwood said. “We have ways to distract them, but the most effective soothers are their families, who can be with them throughout the test.”…

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Being in the Right Place at the Right Time Saves a Family’s Life

Jenny wasn’t sure why she and her husband were so set on celebrating their anniversary in Atlanta four years ago. They were new parents to 6-week-old Raylan, who had been fussy all morning at their Smiths Station, Ala., home. It would’ve been typical for them to just stay home, but for some reason, they decided to press on. When Raylan began screaming uncontrollably in the reptile house at Zoo Atlanta, they were about to find out why. “We tried everything to get him to calm down, but nothing worked. When I picked him up, he was sweaty but felt ice cold to the touch,” Jenny said. “We knew something was very wrong.” Jenny, a nurse anesthetist at Piedmont Columbus Regional Hospital, and husband Micheal rushed Raylan to Atlanta Medical Center, then transferred to the Egleston ED. At first, doctors weren’t sure what was wrong and treated Raylan for septic shock. An echo didn’t immediately reveal the eventual diagnosis, made after a cardiac fellow requested a second echo: coarctation of the aorta. Within 48 hours, Raylan was in surgery to repair the defect. A post-op echo then revealed that Raylan had mitral valve disease as well, and his valve was beyond…

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Supraventricular Tachycardia in Children: What You Need to Know

When Zeke was almost 2 months old, his mom took him to the hospital when he began throwing up more than he was eating. Immediately, the doctor knew what was wrong. Zeke’s heart was beating at 285 beats a minute, and later soared to 310 bpm, as the staff worked to slow it down through intravenous medication. A top-end heart rate for children is roughly 220 bpm minus the child’s age in years. Rates faster than that can indicate supraventricular tachycardia (SVT), an abnormally fast heart rhythm caused by an electrical short circuit in the top chambers of the heart. Zeke had SVT. It was a scary day for Zeke’s family, but SVT is a highly treatable condition that can be treated safely and effectively in children. “In general, SVT is not life-threatening,” said Peter Fischbach, MD, Director of Electrophysiology at Sibley Heart Center. “It’s mostly just disconcerting and uncomfortable. It’s the unpleasant feeling of having a racing heart rate that you can’t stop.” The pathways in the heart that support SVT are usually present just as a mother is finding out she is pregnant, at about 8-10 weeks of gestation. But just having these abnormal pathways doesn’t mean that…

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Rare Conditions Treated with Care by Experts in Aorta and Vascular Program

Sometimes blood vessels can be too large, too small or twisted. When this happens in children’s hearts, they may be evaluated for one of the rare conditions treated by the Aorta and Vascular Program at Sibley Heart Center Cardiology. The Aorta and Vascular Program treats a variety of rare, usually heritable blood vessel diseases, and it is one of very few in the Southeastern U.S. totally dedicated to the diagnosis and treatment of these diseases in children. Dr. Denver Sallee, MD, Director of the Aorta and Vascular Program, and his team are top experts in the field, which can provide great comfort to families facing one of these diagnoses. The conditions treated in the Aorta and Vascular Program include: Marfan Syndrome Loeys-Dietz Syndrome Aortic Aneurysm Bicuspid Aortic Valve (BAV) Ehlers-Danlos Syndrome (EDS) Noonan Syndrome Turner Syndrome Alagille SyndromeWilliams Syndrome Tuberous Sclerosis Aortic Dissection Aortic Ectasia Enlarged or dilated vessels Stickler Syndrome Dilated aortic root or aorta Patients with these conditions often need follow-up care and management. The program clinic offers close monitoring, medical management, educational support, and surgical intervention, if necessary. They also facilitate multidisciplinary coordination of care with ophthalmology, orthopedics and pulmonary physicians. Because of the exceedingly rare nature…

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Fetal Heart Rate Paints a Picture of Baby’s Health

Hearing her baby’s heartbeat for the first time can be one of the highlights of a woman’s pregnancy. In fact, checking the rate and rhythm of a baby’s heartbeat with a Doppler ultrasound is a routine part of each visit to the obstetrician during pregnancy. The fetal heart rate tells the doctor important information about the health of the baby. A healthy baby’s heart usually beats 110-160 times a minute in the womb. It speeds up when the baby moves. Fetal heart rates also help count contractions and tell if a mother is going into labor too early. Signs of an abnormality with the fetal heart rate may require a referral to a fetal cardiologist to rule out structural problems with the heart, diagnose the rhythm and do something to manage it, if necessary. Erik Michelfelder, MD, Director of Fetal Cardiology at Children’s Sibley Heart Center, says there are three categories of abnormality when it comes to fetal heart rate: Too fast, too slow and irregular. Too fast The most common reasons for a fetal heart rate that is too fast, known as tachycardia, are supraventricular tachycardia and atrial flutter. “With fast rhythms, we can give medications to the mom, which…

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Mason’s CHD Journey – The Glenn, Norwood & Fontan

In 2011, when I was approximately 20-23 weeks pregnant with my first child, Mason, it was discovered that he had hypoplastic left heart syndrome (HLHS). We never thought about terminating the pregnancy and always felt like God chose us for a reason to have this special child. Although, I was in disbelief at first, I just wanted to know what the next step would be and if there was a way to fix his heart. I was sent to see Dr. Neill Videlefsky who reviewed Mason's scans and requested to send them to Dr. Wayne Tworetzky in Boston to see if Mason was a candidate for an experimental procedure called balloon valvuloplasty. In a whirlwind, we found ourselves on a plane to Boston the same night we were notified that Mason qualified. On our first day, we met with multiple teams that would take care of Mason and I during the procedure, which ended up being a success, and at first, Mason showed increased function in the left side of his heart. Unfortunately, as he grew, the growth of the left ventricle began to slow and it was determined that Mason would require all three surgeries; the Norwood, the Glenn,…

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Preventive Cardiology – What You Need to Know

The primary goal of preventive cardiology is to develop permanent, healthy habits in kids that will decrease the chances they’ll develop cardiovascular disease as they grow older. Heather Phelps, D.O., a pediatric cardiologist at Sibley Heart Center Cardiology and director of CHOA’s Preventive Cardiology Program, shares her insight into the importance of preventive cardiology. Why Preventive Cardiology is Important “Preventive cardiology has to do with the idea that we can modify some lifestyle habits that can help us decrease our chances of getting cardiovascular disease as we age,” says Dr. Phelps. “Two of the most common reasons a child would need to see a preventive cardiologist is because of hypertension (high blood pressure) or dyslipidemia (high cholesterol), which are two major concerns for kids.” Evaluation and treatment of these problems early in life can improve their long-term cardiovascular health. We are often able to treat these conditions non-invasively, that is without medication and with dietary improvements and increased physical activity. We tailor our recommendations specifically for the individual patient. “Our goal with our patients is to set realistic, gradual lifestyle changes that will have a positive impact on their cardiac health in the future.” Universal Screening for Elevated Cholesterol Not…

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Sibley Cardiac Sonographer Uses Own CHD Experience to Help Others

When Dana Jones’ daughter was just 4 years old, she would randomly tell people at Walmart that God told her that her mom was going to die before she turned 5. It became such a common occurrence that Dana had to tell her to stop. Not long after, however, Dana, a cardiac sonographer, found a rapidly growing aortic aneurysm in her own heart. Within days, she was undergoing emergency open heart surgery at the age of 24. Dana was born with a heart murmur and diagnosed with what was thought to be a bicuspid aortic valve (two aortic leaflets instead of three) at age 5. She was treated at Medical Center of Central Georgia in Augusta. Aside from frequent cardiologist visits, she says her childhood was fairly normal. “Growing up, I tried not to let CHD define me,” Dana said. “In fact, I didn’t want any of my friends to know because I didn’t want them to pity me or treat me differently. My parents never treated me any differently from my brothers. They let me decide if certain activities were too much for me.” She also felt heard and understood by her pediatric cardiologist, Dr. Strong, who has since…

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Why William is a Miracle

William, a polite 11-year-old boy who loves video games, Legos and math, wrote a poem about a cardiac surgeon at CHOA. Although it was a school assignment, it was entered in the 2018 Reflections National Competition, which had the theme of “Everyday Heroes.” Here is his poem: My Hero When I was only 9 months old A hero was in my life, I’m told – A doctor stood up and did his part To save my tiny, broken heart. When he was prepared and totally ready His hands were oh so very steady. He fixed my little beating heart Just like he had said from the start. I’m so thankful for this hero Because without him, I would have died when I was zero. He tried so hard to save my life. And now one day I’ll have a wife. And maybe a kid or two or three. And with them I can climb a tree! My future is wonderful, and SUPER bright. Because of my hero, without fright. Who was brave and bold and kind as can be And one day, I’ll be a hero For someone like me. As he stated in his poem, William was diagnosed with…

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A Little Girl with a Big Heart and Sweet Soul

At 30 weeks pregnancy, my doctor shared her concerns with me about the rate my daughter was growing. Due to Addilyn measuring smaller than the average baby I was referred to and followed by a perinatologist weeks prior to Addilyn being born. After numerous tests and weekly ultrasounds, I was relieved with the news that my daughter was simply smaller. To take all precautions, I was still strongly advised to go through with an early induction. So, at 38 weeks pregnant, I arrived at the hospital anxious and excited to meet my baby girl. Little did I know what was ahead of us. On November 10, 2016 I held my beautiful daughter for the very first time. I will never forget the day Addilyn was born, as many parents will recall, it is an indescribable moment filled with an overwhelming amount of love and joy. While I was able to cherish this moment briefly, my heart was shattered within hours when Addilyn was diagnosed with three heart defects, a VSD, PDA, and PFO. After receiving the news, I remember trying to quickly comprehend and grasp this new reality while I watched the doctors perform numerous echoes on my innocent baby…

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Parenting a Child with Congenital Heart Disease

When a parent learns the news that their unborn or newborn baby has congenital heart disease (CHD), they're put into a position they were never expecting to be in. In general, being a parent comes with a lot of emotions, and if your child has a heart condition, these emotions can be amplified. Anthony and Lacy are the parents of a six-year-old named Josiah who was prenatally diagnosed with hypoplastic left heart syndrome. In this post, they share their wisdom and experience of parenting a child with CHD. Before Your Child is Born Ask questions. If you find out about your child’s heart condition prenatally, it’s essential to have a clear understanding of their exact medical condition. Be sure to ask your cardiologist as many questions as you can to get an all-around understanding of it. “There’s no such thing as a bad question,” says Lacy. Understand the financial component. The unfortunate truth about CHD is the surgical and medical costs can be extremely expensive, even in you have health insurance. Make sure you have an understanding of your health insurance coverage and the financial assistance policy your hospital can offer. Prepare your other children. If you have other children,…

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Why Ella is So Blessed

Ella is an extremely blessed person. Not only was she gifted with a beautiful voice and songwriting talents, but she also survived a cardiac arrest at the age of 14. As she was entering a basketball game during a tournament, she dropped to the ground and went into cardiac arrest for seven minutes. An automated external defibrillator (AED) that was on site at the gym was crucial in saving her life. “I completely blacked out, and after someone performed CPR and used the defibrillator on me, I was rushed to the hospital. I stayed there for a week while doctors ran every single test they could to figure out what went wrong,” says Ella. Doctors concluded that “an electrical short circuit” happened in her heart, but never found the reason why it happened to this healthy teenager. While doctors hoped nothing like this would happen again, they decided it would be best for Ella to receive an implantable cardioverter-defibrillator (ICD) in case it did. “I was told that when something like this happens to a person, they’re usually don’t come back as the same person or live through it,” says Ella. “Because of that, I’m happy I have this defibrillator…

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Pediatric Dentistry and CHD: What You Need to Know

When a child takes proper responsibility of their oral hygiene, they will reduce their risk for infection, prevent cavities, and establish a routine early in life that will set the foundation for the development of healthy, strong teeth. Dental care is extremely important for all stages of life, especially for children with congenital heart disease (CHD). If your child has a heart condition, Pediatric Dental Hygienists Anna Sidel and Tiffany Yater have some important tips you need to know when it comes to pediatric dentistry. What is Infective Endocarditis? One of the most significant risks that children with CHD need to look out for when it comes to dentistry is infective endocarditis. Infective endocarditis is an infection in the heart valves or the inner lining caused by bacteria entering the bloodstream. While infective carditis is not common, it can be a severe infection if contracted. The American Heart Association (AHA) has guidelines that state only children with high-risk heart disease require antibiotics prior to dental treatment. This includes patients who have: Artificial heart valve Endocarditis in the past Certain congenital heart diseases Heart transplant with heart valve disease If a child does need an antibiotic before a dental visit, they…

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Miranda: The Miracle Baby

Lorena, a Venezuelan native who is the proud mother of three-year-old Miranda, suffered four miscarriages before becoming a mother due to a blood clot disorder. When she finally became pregnant with Miranda, her excitement was paused at her 20-week appointment at her perinatologist’s office. It was at this appointment where she learned that something was wrong with Miranda’s heart. “They couldn’t tell us what specifically was wrong, but that it was serious,” says Lorena. “After everything we had been through, it was devastating to hear this news.” Lorena and her husband Daniel were then referred to Sibley Heart Center Cardiology to get an echocardiogram (echo) of Miranda’s heart. At this appointment, doctors confirmed that Miranda has hypoplastic right heart syndrome (tricuspid atresia), transposition of the great arteries (D-TGA) and a ventricular septal defect. This complex diagnosis led to close monitoring of Miranda for the rest of the pregnancy and prepared her for the surgeries she would need. When Miranda was born January 18, 2016, she only weighed five pounds, five ounces at 40 weeks. She was immediately taken to the intensive care unit and stayed there for her first 18 days. She was only home for a few days before…

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Miranda: The Miracle Baby – Spanish Version

Lorena, nativa de Venezuela y la orgullosa mamá de Miranda de tres años, sufrió cuatro abortos espontáneos antes de ser madre debido a un trastorno en la sangre. Finalmente quedó embarazada de Miranda, y su emoción se detuvo durante su cita a las 20 semanas en el consultorio de su perinatólogo. Fue en esta cita donde se enteró de que algo estaba mal con el corazón de Miranda: "no pudieron decirnos cuál era específicamente el problema, pero sí nos dijeron que era grave", dice Lorena. "Después de todo lo que habíamos pasado, fue devastador escuchar esa noticia". Lorena y su esposo Daniel fueron remitidos a Sibley Heart Center Cardiology, donde le harían un ecocardiograma (eco) del corazón a Miranda. En esta cita, los médicos confirmaron que  Miranda tenía síndrome del corazón derecho hipoplásico faltandole la válvula tricúspide (también conocida como atresia tricuspídea), con transposición de las arterias principales (D-TGA) y defecto septal ventricular. Este complejo diagnóstico los llevó a una estrecha vigilancia de Miranda durante el resto del embarazo y la preparó para las cirugías que necesitaría al nacer. Cuando Miranda nació el 18 de enero de 2016, tan solo pesaba cinco libras y cinco onzas. Fue llevada inmediatamente a…

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Your Top 8 Heart Questions Answered!

By: Dennis Kim, MD, PhD *Director, Pediatric Cardiac Catheterization Laboratories, Children’s Healthcare of Atlanta/Sibley Heart Center Cardiology* All Ages *February is American Heart Month, so one of our pediatric heart healthexperts, Dennis Kim, MD, PhD, is answering questions about kids’ heart health here at the Healthy Dose blog! A father to five daughters, Dr. Kim understands the challenges of raising a healthy family in our busy world. Dr. Kim is the director of the Pediatric Cardiac Catheterization Laboratories at Children’s Healthcare of Atlanta/Sibley Heart Center Cardiology, where he diagnoses and treats kids and adults with congenital heart disease using catheter-based methods. Dr. Kim started his medical career in general pediatrics and pediatric cardiology. He’s also the editor-in-chief for SecondsCount.org, a website dedicated to patient education for cardiac issues. Dr. Kim answered some of our top questions about heart health and has some great tips for building healthy heart habits for life!* Q: Do parents need to be concerned about kids’ heart health? A: It’s easy to think children don’t need to worry about heart-related issues like hypertension, cholesterol and cardiac disease. And while it’s true the risk factors for these problems increase as you get older, very often it’s the…

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Heart Murmurs in Children: What You Need to Know

Heart murmurs in children are one of the four primary reasons why a new patient would be referred to Sibley Heart Center Cardiology’s outpatient office (the other three symptoms are chest pain, passing out (syncope) and irregular heartbeat). Many people have a different definition of a heart murmur than cardiologists, and pediatric cardiologist Robert Campbell, M.D. shares his insight into what a heart murmur is and is not. Heart Murmur in Children Definition At its simplest terms, a heart murmur is the noise of turbulent blood flow. “Think about a river. A smooth stream makes close to no noise, but a waterfall over rocks makes a lot of noise because it’s a turbulent area for water,” explains Dr. Campbell. It’s also important to understand that the heart murmur itself is not the cause of a heart condition. Heart murmur and heart disease are two different things, and if you have a family member who suffered from a heart condition, it’s easy to link these two together,” Dr. Campbell says. “A murmur may be present because of a heart condition, but it’s not definite. When your child comes to me for heart murmur evaluation, I want to answer one question: what’s…

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Nathan: The Warrior for Kids with Heart Conditions

Nathan has big dreams in his sight; he wants to be on the television show American Ninja Warrior Junior. His reasons for being on the show are unique to other contestants, as he wants to represent kids like him. “I want to be on American Ninja Warrior because I want to stand up for kids with heart conditions. I want to encourage them that they can do anything they want to.” Unlike other children who have been diagnosed with heart conditions prenatally or days after they were born, Nathan was diagnosed with an absent left pulmonary artery at the age of six. In March 2017, his mother Jennifer took him to the doctor when he was sick with the flu. His doctor listened to his heart and heard a heart murmur. They were immediately sent to Sibley heart Center Cardiology for an EKG and ultrasound, and shortly after they received the diagnosis. “We saw Dr. Heaton soon after his diagnosis. She is the one who believed she could place a stent through the cath lab. He needed the stent to open up his left pulmonary artery (which was about a fourth of the size it should be at that time),”…

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When is Child Chest Pain Cardiac Related?

When a child complains about chest pain, it can be associated with serious health problems. While it’s not common, chest pain in children can be linked to cardiac-related issues, and it’s important to understand when you need to see a cardiologist due to this pain. Brandon Harden, MD, a pediatric cardiologist at Sibley Heart Center Cardiology, shines a light on when your child’s chest pain could be cardiac related. How Common is Cardiac-Related Chest Pain Chest pain is a very common complaint in children and adolescents. However, whether your child has a heart condition or not, chest pain is rarely cardiac related. “Although we see a lot of patients who come in with chest pain, it’s not associated with the heart 99% of the time,” says Dr. Harden. If a child’s chest pain is linked to a cardiac issue, the chest pain typically needs to be related to exercise or exertion. ”Unless your child is pushing their physical limits and starts feeling chest pain during strenuous physical activity, it’s not a concern that these cardiac-related issues caused the pain.”   A study was conducted at Children's Healthcare of Atlanta (CHOA) in 2014 that evaluated approximately 4,000 pediatric patients that presented…

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How Iris Steals Everyone’s Heart

Iris, an almost two-year-old girl who was diagnosed with a complete atrioventricular canal defect (CAVA) and atrial septal defect (ASD) of the secundum, has been described by her parents as “a music lover and someone who always has everyone’s attention.” While she constantly brings a smile to her parents Lauren and Ryan’s faces, her journey to where she is today has been a long and hard process. Lauren was six weeks pregnant with Iris when blood test results show she was flagged with Trisomy 21, also known as Down syndrome. These babes are more prone to have heart conditions, and Lauren and Ryan were sent to Sibley Heart Center Cardiology to learn more. “We met with Dr. Videlefsky and he thoroughly explained all the possibilities that came come with Trisomy 21 and anything we needed to prepare for,” says Lauren. “He explained it simply and not in medical terms that went over our heads, and he understood the emotional side of the possibilities.” After Lauren’s first fetal echocardiogram (echo),  Dr. Videlefsky discovered Iris had multiple heart conditions. He drew Ryan and her a picture to better understand what’s going on with Iris’s heart and what to expect. Lauren and Ryan…

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Advice and Lifelong Considerations for Parents of Children with CHD

When a child is diagnosed with congenital heart disease, there are a lot of lifelong considerations parents need to take into account. Tim Watson, M.D., a pediatric cardiologist at Sibley Heart Center Cardiology, has learned firsthand what kinds of things parents need to consider with their child, both now and in the future, and shares his knowledge in this post. Not All Physicians Have the Same Specialities While all pediatric cardiologists study and treat heart diseases and heart abnormalities, some physicians can have extra training in subspecialties of cardiology. Some of these include echocardiology (the study of complex heart ultrasound interpretation), electrophysiology (the study of heart rhythm abnormalities), cardiac catheterization (interventional procedures), adult congenital (take over care after children with heart disease become adults), and more. “With this diversity of subspecialties, it’s important to know that your child may need to work with other physicians to get a full-rounded understanding of their condition,” says Dr. Watson. “The physician a patient has seen for the last ten years may do one thing, but other physicians will perform other tasks within their subspecialty.” How Your Child Can Prepare for The Visits When you go into a clinic to meet with your child’s…

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Charlotte, Jack and CHD

Today, Sarah shares the story of her two children with CHD. First, daughter Charlotte was diagnosed, then son Jack. After a quick labor and a normal pregnancy, just like my first, we met our beautiful daughter Charlotte and looked on in awe as her APGAR test was performed. But I vividly remember watching my husband Thomas, standing over Charlotte, grow increasingly concerned as the doctor’s assessed her condition. Charlotte was blue at birth, and despite seemingly normal breathing, she continued to get bluer. The nurses brought Charlotte over to me and told me to hold her for a minute before she was rushed to the NICU. I’ll never forget trying to take in the curves of her face, her smell, how she felt in my arms – before they took her away. Several terrifying hours passed without any answers or improvement. Her oxygen levels continued to drop. Finally, eight hours after Charlotte was born, Dr. James Sutherland from Sibley came into our room and told us that our daughter had Pulmonary Atresia, a congenital heart defect. With her completely obstructed pulmonary valve, her heart couldn’t pump blood to her lungs. Dr. Sutherland patiently and compassionately explained that she would first…

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What to Do if Your Baby Has a Heart Defect

When you find out your child has a heart defect, you may feel overwhelmed with emotions and lost on what next steps you need to take. Dr. Divya Suthar, a pediatric cardiologist at Sibley Heart Center Cardiology, has this key advice for any parent who just learned their child has a heart defect. Don’t Panic The news about your child’s heart condition may come as a surprise, but the first thing to understand is not to feel overwhelmed. “As doctors, the first step we will take is to explain what your baby’s heart condition is and what that means going forward,” says Dr. Suthar. “Whether those next steps are surgery, taking medications, or monitoring at routine visits with a cardiologist, we will have a clear plan outlined for your family.” If you do find out your baby has a heart condition when you are pregnant, the advice is still the same. “Don't blame yourself for his/her condition. There’s a one percent chance of heart defects in newborns, and it’s not because of anything you did. We can take this as an opportunity to prepare before your baby is born, and together we can determine what next steps we need to…

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He is the Light in our Life – Axel’s Story

Axel, born on August 10, 2017, is described by his mom Tara as a peaceful child. The name Axel actually means “Father of Peace,” and she says he has lived up to his name. This characteristic is considered a blessing by Tara since he was born with coarctation of the aorta (narrowing in the aortic arch of the heart), bicuspid valve and ventricular septal defect (VSD), which has closed. Three days after Axel was born, he was about to be released from the hospital to go home when a nurse noticed how heavy he was breathing and limp his arms were when she picked him up. The nurse immediately ran a few tests on the baby, which put Tara on edge. “The nurse came back by herself and asked how I was doing. I knew at that moment that something was wrong,” says Tara. While the news was shocking, it wasn’t the first time she heard that Axel could have a heart problem. At Tara’s 25th-week checkup, they heard a heart murmur when listening to Axel’s heart. She was then sent to a prenatal specialist for further examination that morning. After taking echocardiograms (echoes) of Axel’s heart, the doctor concluded…

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What is the Difference Between Congenital and Acquired Heart Defects?

Not all heart diseases are the same, and there are some vast differences between congenital heart defects and acquired heart defects. Discover what you need to know about these different heart defects. Main Differences Between Congenital and Acquired Heart Defects Congenital heart defects are present at birth. This defect comes from an abnormality in the development of the heart in the embryogenesis stage. There are a lot of steps the body takes when forming the heart into an organ, and if the slightest detail goes wrong, it can result in a congenital heart defect. No two cases of congenital heart defects are identical, and there are specific genetic syndromes with higher chances of having a defect, such as Trisomy 21. Acquired heart defects are something a person would acquire over time. In other words, these problems develop after a baby is born, rather than during embryogenesis. These are defects that most people think of when they imagine “having heart problems,” and are more commonly seen in older adults. Heart attacks, angina, and excessive calcium build-up on the heart valves are the most common types of adult acquired heart disease. Acquired heart disease is generally rare in children because it takes…

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Exercise Restrictions for Children with Heart Conditions

Many children with heart conditions go on to lead healthy lives, but living with these conditions can also come with restrictions on the length and types of exercising they can perform. If your child has a heart condition, here is what you need to know about their exercise restrictions. How Strict are the Exercise Restriction Guidelines Pediatric cardiologists are required to share the exercising guidelines that parents and patients need to know. However, these guidelines don’t have concrete statistics to support them and will be more applicable to certain conditions than others. In many doctor’s eyes, the guidelines are just that, and they shouldn’t be considered as strict rules. Your family should pursue a shared decision discussion with your child’s physician about how strictly or loosely your child needs to follow these. You should also discuss the risks of not being active and should all make a collective decision together about what’s best for your child’s condition. When Should Your Child Exercise Caution When a patient is engaging in physical activity, they need to be self-aware and watch out for the following symptoms: Skipped heartbeats Chest pain Feeling winded If they do start to feel any of these symptoms, they…

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A Sweet Girl with a Lot of Love in Her Heart

Natalia is just like any other one-year-old girl. She’s a sweet, loving baby and a Daddy’s girl who sees him as her everything. She’s also described as a hyper, energetic baby, and many people wouldn’t be able to tell after meeting her that she has been in and out of the hospital her whole life. On January 21, 2017, the day she was born, Natalia’s parents were told she had a congenital heart condition called hypoplastic left heart syndrome (HLHS), where the blood flow through the heart is weak due to the left side of heart not fully developing while in the womb. She was also diagnosed with aortic valve atresia and ventricular septal defect, which are linked to her HLHS. Natalia was immediately transferred to Children’s Healthcare of Atlanta, where doctors performed the Norwood procedure. This surgery’s purpose is to rebuild the heart, so the right side of the heart becomes the main pumping chamber to get blood to the lungs and rest of the body. After two weeks of recovery in the hospital, Natalia was sent home to fully recover. Six months later, she returned to the hospital to have the follow-up Rastelli surgery and coarctation repair. Following…

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The Importance of Pulse Ox Screening

Newborn screening for critical congenital heart disease using pulse oximetry screening (also called pulse ox screening) has become one of the most vital screenings a baby can receive. This simple screening measures a newborn’s oxygen levels in their blood and helps determine if the newborn has any serious heart defects or diseases. Why Pulse Ox Screening is Important Many children are born with critical congenital heart disease, which is defined as a heart disease that requires intervention (whether surgery or cardiac catheterization) in the first few months of life. While many cases can be detected prenatally or through symptoms not long after birth, many children who had heart conditions have been sent home undiagnosed in the past. When babies are sent home without being correctly diagnosed with congenital heart defects, they could become extremely sick or even die. This is because there are a lot of changes that can happen in the heart within the first few weeks of life. Thanks to pulse ox screening, all newborns can have their oxygen levels evaluated and appropriately treated before they leave the hospital. While the importance of pulse ox screening cannot be denied, it wasn’t until 2011 when it was added to…

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Long View After Congenital Heart Surgery

Congenital heart surgery can be a very daunting operation for any child or parent to experience, and the road to recovery has different phases that will vary for each patient. In this post, we hope to shed some light on what to expect after your child goes through congenital heart surgery. Immediately After Surgery Once the procedure has been completed, your child will go straight to the Intensive Care Unit (ICU) and be observed by a specialized team and advanced monitoring equipment. The most critical phase after surgery is monitoring your child after the cardiac intervention, as there could be a lot of risks with other organs depending on the severity of their operation. The amount of time a patient recovers in the hospital is entirely situational and depends on the particular lesion and procedure. It can go from a few days or less than a week to up to several weeks or months. Going Home After Surgery When your child leaves the hospital after their surgery, depending on their personal experience with the operation, they will probably go back for a follow-up appointment after they go home. Doctors typically like to see patients one to two weeks after congenital…

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Preparing for Child’s First Visit at Sibley Heart Center Cardiology

If you’re planning your child’s first appointment to Sibley Heart Center Cardiology, there is some necessary information you need to know to prepare them for this visit. How to Best Prepare Your Child No matter your child’s reason for an appointment, here are the basic things you need to know before arriving at Sibley Heart Center Cardiology: Bring the names and addresses of all your child’s doctors to the appointment. Arrive at least 15 minutes before your child’s appointment to complete first-time visit paperwork. Remember to bring your child’s insurance card, medical referral form, and insurance referral form. To diagnose your child’s heart problems correctly, our staff will ask for your child’s medical history. Please bring any medical records or prior test results that will be helpful for this appointment. Bring your child’s medicines, including vitamins and herbal medicines, or a copy of the prescription and any necessary medical records. Do not use lotions, oils or powders on your child’s skin before the appointment. Talk to your child about the appointment and why they are coming to Sibley Heart Center Cardiology. If they have any questions, our staff will do their best to address the child first at their appointment.…

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From Patient to Dreaming of Medical School

Cain, like many other 16-year-olds, enjoys playing sports, specifically soccer and basketball. What makes him unique is he has been diagnosed with nonrheumatic aortic stenosis, aortic root dilation, and right ventricle to pulmonary artery (RV-PA) conduit obstruction. As you can imagine, these heart conditions keep him on the sidelines more than on the playing field. “Throughout most of my early childhood, I wasn’t aware of my severity of heart problems,” says Cain. “I didn’t realize the parameters that were set on my life until I got to an older age. I can’t play competitive sports, and I can’t do everything my peers can like run or lift weights. Those are things I still struggle with, but it doesn’t hurt me; it’s just different.” When Cain was just two weeks old, his mother Nicole took him in for his scheduled wellness checkup and discovered he had a heart murmur. When Nicole was referred to a cardiologist at Sibley Heart Center Cardiology and agreed to make an appointment for Cain, the doctor urgently replied, “No, I already made an appointment for Cain. You need to go now.” It was at this impromptu appointment where Cain received his diagnosis later that day. “Later…

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I Wouldn’t Change My Life for the World – Anna Grace’s Story

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Heart Warrior Owen

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Heart Dad inspired by transplant recipient daughter

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Heart Warrior Brothers- Miguel and Dominic

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Superhero Scars and No Limitations

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My Child Has CHD – What Happens Now?

For symptoms of CHD in babies, children and teens, Click Here. So you’ve learned that your child has a congenital heart defect (CHD). Their diagnosis might feel overwhelming. You might feel like the world has gone sideways. “My first reaction was to pick my baby up and run out the door; somehow thinking that that would save her life. The feeling was indescribable.” At Sibley, it is our privilege to mend and manage hearts so our CHD patients and their families can get back to living lives simply and to the fullest. If you’re just starting your heart journey, here are the basics of what to expect. Diagnosis “A doctor I didn’t know, with ‘Pediatric Cardiologist’ stitched on his white coat, was at the door. In that moment, I knew our entire world was about to be flipped upside down.” CHD is not diagnosed with a single test. Your doctor will use some combination of family history, risk factors for CHD, a physical exam. Testing may also involve performing an EKG and/or echocardiogram (aka “echo”, which is an ultrasound of the heart). Once you have a diagnosis for your child, here are some basic Do’s and Don’ts that may help…

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Symptoms of CHD in babies, toddlers, preteens and teens

CHD is has a variety of symptoms and not every child presenting with these symptoms has heart problems. (Some kids are just sweaty sleepers, for example.) Symptoms of CHD in kids may appear quickly after birth, but may not show up until your child is a toddler, a teen or a young adult. Babies Persistent fast breathing Heavy breathing, also known as retractions (skin pulling in under rib cage or under neck) Long feeding time, refusal to eat Low energy/activity level Poor weight gain Gums and tongue turning blue, or a blue/grey tinge to the skin Toddlers and Young Children Poor energy level, tiring easily Gums and tongue turning blue, or a blue tinge to the skin Poor growth Chest pain Rapid heartbeat or breathing Passing out Losing their breath during activities sooner than their peers Preteens/Teens Problems with growth/development Fainting/passing out Gums and tongue turning blue, or a blue tinge to the skin Chest pain, especially with exercise Rapid heartbeat or breathing Losing their breath during activities sooner than their peers Palpitations, or hearts beating abnormally or skipping a beat Dizziness with exercise This is not a comprehensive list of all signs and symptoms. Please contact your child’s doctor, if you child experiences…

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Unpredictable Blessings

"I'm sorry, but there is something wrong with your baby's heart," were the words we heard when I was 28 weeks pregnant with our baby, Madden. After trying so hard to get pregnant and to start our family, it was difficult to hear. We were angry, frustrated and sad. We were also confused and didn’t know what having a baby with congenital heart defects would entail. When Madden was born in March 2017, our new reality began. This was no longer a story we were being told about a baby we hadn't met, it was our son’s heart journey. The first thing we learned along the way was that anything can change at any time with a CHD baby. The day after he was born, Madden was transferred to CHOA. His CHD diagnosis changed significantly upon his arrival. We learned that Madden has Tetralogy of Fallot with presence of MAPCAS (major aortopulmonary collateral arteries). This includes a hole in the heart (VSD) and Pulmonary Atresia. At first, we were told that Madden would need an operation very soon and that he would not survive without IVs to provide medications until then. His open heart surgery was scheduled for when he…

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Meet Laura

Sibley is known for our incredible nurses and doctors, but what most parents don’t realize is that we also have a team of specialists who also help to mend and manage children’s health. March is National Nutrition Month, so we’re highlighting our own Sibley Nutritionist, Laura Hamilton.  What do you do here at Sibley? I work on the Preventative Cardiology Team. I meet with patients and their families to help them get a better understanding of how their diet and food choices are affecting their health, both positively and negatively. I then help parents, and older children, like teens, create a better plan for their eating.  I also work with our infants and help with their feeding struggles. What’s the best part of your work? I really enjoy talking to families who have convinced themselves that to improve their nutrition, they have to be perfect every day. They get overwhelmed by that idea. But I’m a nutritionist and even I’m not perfect every day! When I see people realize that they can find ways to fit good nutrition into their lives and that they don’t need to let perfect be the enemy of good, I get really excited. We can…

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New Depths of Exhaustion… And Immeasurable Joy for Ava and Her Heart Mama

Today, our daughter Ava is a healthy, spunky, medication free, wild and talkative three and a half year old. But where we are today wasn’t certain when I was pregnant with Ava. I was told at my 20-week scan that they wanted me back in 5 weeks because there were some things they couldn’t see. I thought nothing of it. At that 25-week follow up, we learned something was not right and were immediately sent to Atlanta Perinatal Consultants. After two not quite right diagnoses, we were sent to Sibley. My husband Chandler and I felt desperate for knowledge, for answers, for hope. It was at Sibley that we finally were given some answers – Ava was diagnosed with Shone’ Syndrome – and a surgical plan. We got to tour the CICU at Children’s Healthcare of Atlanta at Egleston, which gave us a little glimpse into our future. When I delivered Ava, Sibley doctors came straight to Ava’s NICU. They performed some tests and talked to us. Sibley was always on top of things, which gave me a sense of security. At 6 days old, Ava underwent open heart surgery to repair her coarctation and close one of her VSDs. Over…

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It’s About What I Can Do, Not What I Can’t

“We were lucky in the sense that we knew to be looking for signs and symptoms as Rolfe’s father had Marfan Syndrome,” says Tasha. “Getting Rolfe’s diagnosis was pretty simple, as he had physical symptoms that made diagnosis easier to make so early. Not everyone with Marfan is tall and thin, but Rolfe was 23 ¾ inches at birth and weighed 10 pounds.” “At first, it was really overwhelming. I wondered, ‘How will I ever learn everything about his condition? What will his future look like?’ I had an almost grieving period for what I had envisioned life would be like,” says Tasha. “But I also had determination and a feeling of empowerment. Another Marfan Mom told me to relax. She told me that I would become an expert in my child’s condition, often times educating doctors on this uncommon condition. That said, I haven’t had to educate Dr. Sallee – he’s amazingly informed!” A Family’s New Normal “Rolfe has had 4 surgeries so far,” says Tasha. “A left lens removal, left lens muscle correction, an aortic root replacement (valve sparring, David’s procedure) and a modified Ravitch for pectus carinatum.” “I remember that when I was little and wanted to…

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