Every year, approximately 2,000 seemingly healthy people under the age of 25 die from sudden cardiac arrest (SCA), a tragic statistic that Cook Children's Health Care System is working to change.

In recognition of National Sudden Cardiac Arrest Awareness Month this October, Cook Children's is highlighting its year-round commitment to ensure schools and communities are prepared for such a medical emergency through its Project ADAM program, which provides life-saving training and resources.

Sudden Cardiac Arrest occurs when the heart stops beating, which leads to loss of breath or irregular breathing and prevents blood flow to the brain and other vital organs.

“With the proper training, anyone can do CPR and use an AED, and with enough of us trained and empowered to do so, we have the ability to potentially save someone’s life,” said Sarah Thieroff, Project Adam Program Coordinator.

Project ADAM (Automated Defibrillators in Adam's Memory) is a program named after 17-year-old Adam Lemel. In 1999, while playing high school basketball, Lemel collapsed and went into Sudden Cardiac Arrest. His family learned that he could have been saved with the right preparation and equipment. An automated external defibrillator (AED) was not available. His parents helped start the Project ADAM program at the Children’s Hospital of Wisconsin in his memory. Cook Children’s was the first in Texas and is now one of 52 hospitals and program sites to provide free cardiac resources, including training and AED devices. 

Thieroff recalled the motivating force behind the program's founding: "What we learned now is that Adam could have had a chance. I was faced with a choice. I couldn't save my son, but maybe I can save yours," Adam's father said.

More than 780 schools and 28 school districts are recognized to be Heart Safe. A designated Heart Safe school and district have completed a quality AED training program that includes a CPR/AED trained emergency team, an emergency plan for their AED and required AED drills.

“Knowledge of what to do, and muscle memory from practicing the appropriate steps may correspond to earlier action and in turn lead to a more successful outcome,” said Danielle Moyé, M.D., at Cook Children’s Heart Center.

Beginning the 2026-2027 school year under Senate Bill 865, also known as the Landon Payton Act, public and private schools will be required to implement a cardiac emergency response plan, mandate CPR and AED certification for specific school employees and volunteers, and require drills to test their emergency response.

“With the SB 865 bill, we have legislative support to encourage schools to act now and prepare,” said Dr. Moyé. “And we are ready to help them. We are here and happy to walk through what this looks like and ease some of the burden from the school’s administration, nursing team, and district.”

An AED is supported by the FDA to detect ventricular fibrillation. It has been designed and tested in both children and adults. Cardiac arrest is reversible in most victims if it is treated within a few minutes with an electric shock to the heart to restore a normal heartbeat. This process is called defibrillation. A shock delivered by an AED within 3-5 minutes can save a life and for every minute that passes, survival rates drop by 10%.

Through the Cook Children’s Project ADAM program, anyone can be trained. The program provides schools across Texas with the necessary tools and education to plan and develop their public access defibrillation (PAD) program.

“The expectation is that schools will be prepared for if it happens, not just putting it off or waiting to establish an emergency team, plan and/or drill if/when it happens,” explained Thieroff.

Signs and Symptoms of Sudden Cardiac Arrest

• Not breathing or irregular breathing (i.e. agonal gasps)
• Unresponsive and/or sometimes there are “seizure-like” movements.
• If someone witnesses a collapse:
  • Check for responsiveness.
  • Tap/lightly shake the person and ask if they’re okay, then if they’re not responsive, call for help/have someone call 911 immediately
  • Send someone to get the AED. If they’re unsure where the AED is, when they call 911, the 911 dispatcher should tell them the location of the nearest registered AED in the area.

Cook Children’s provides free Hands Only CPR/AED training, cardiac emergency response planning, and AED drill assistance to any school in Texas. Call 682-885-6755 or email ProjectAdamTexas@cookchildrens.org. For more information on free resources on the local Project ADAM program, visit www.projectadamtexas.org or the national Project ADAM page at www.projectadam.com

The newest generation of imaging tools and technology at Cook Children’s Medical Center’s three-dimensional lab for the planning and printing of congenital heart disease (3D aPPROaCH Lab) makes it possible for cardiac surgeons to see, study, feel and manipulate congenital heart defects and complex heart conditions prior to stepping into the operating room to surgically repair them.

In the 3D aPPROaCH Lab, physicians use two-dimensional (2D) imaging data to create 3D pictures. Those 3D images are then used to create virtual reality simulations of a patient’s specific anatomy. This allows a surgeon to practice a procedure virtually beforehand so that there are few, if any, surprises during an operation. For an even more hands-on assessment, the lab’s 3D printer can print a life-size model of the heart, allowing physicians to gain a better understanding of the anatomy and needed interventions.

To understand the difference the 3D aPPROaCH Lab makes in the repair of congenital heart defects, imagine being in a vacation rental home. You’ve spent a little time there and are somewhat familiar with the space, but not so much that you can navigate the house in the dark without running into an unexpected piece of furniture that your mind’s eye failed to capture or recall. Back in your own home, however, you easily navigate your living room in the dark without breaking a toe or bruising a shin. Having walked through the space over and over, your mind’s eye is stamped with a detailed map, giving you the spatial awareness you need to navigate the space even with the lights off.

Similarly, with 2D scans, surgeons have a general idea of what to expect during surgery having seen some portion of the anatomy. But they know a 2D view doesn’t always tell the whole story. Surgeons often have to take a “wait-and-see” approach to complex operations knowing they may encounter things that were not visible via 2D scans. While surgeons are trained to think fast and provide a fix on the fly, those unexpected encounters increase the risk of complications and the potential for additional surgeries.

With 3D virtual reality tools and printed models, surgeons are able to visualize all parts of the anatomy, inside and out, plan a more comprehensive repair and practice their surgical approach prior to an operation. These tools reduce the surprise factor and increase the ability of the surgeon to perform a safe, more complex and long-term surgical repair.

“Three-dimensional printing moves us in medicine from a place where we're just having a conceptual understanding of complex hearts to a place where we are out there practicing an intervention, much like a pilot in a flight simulator,” said Steve Muyskens, M.D., cardiologist and medical director of cardiac MRI and the 3D aPPROaCH Lab at Cook Children’s. “We can take things that you can't get to because they're inside of a person and maybe are out of the ordinary or unique approaches due to their anatomy or their specific problem and actually practice the approach and fix. So when you get into that unique situation, you have better bearings, and you have a better chance of having a successful outcome.”

Vincent Tam, M.D. cardiothoracic surgeon and medical director of cardiothoracic surgery at Cook Children’s, uses the 3D aPPROaCH Lab to prepare for his complex heart surgeries.

“There is no question that having an accurate three-dimensional model in your hands is obviously much easier and much better in terms of planning and thinking ahead of what you may encounter in terms of what the inside of the heart looks like and what you may have to do to correct the defect,” Dr. Tam said.

For patients, these tools can mean the difference between surviving versus thriving.

“This moves us beyond just a simple understanding and gives us the ability to offer more complex and long-term surgical solutions,” Dr. Muyskens said. “We're not just trying to get patients to survive like we were 30 or 40 years ago. We want to be able to do complex repairs early on to reduce complications so that children thrive into adulthood and need fewer interventions down the road.”

That was the case for Ivy Chacon. She was the first patient to benefit from the full technology of the 3D aPPROaCH Lab in 2017 when she had heart surgery at 19 months old. Chacon was born with an extremely rare heart defect called congenitally corrected transposition of the great arteries and dextrocardia. Dr. Tam, along with Hisashi Nikaidoh, M.D., retired Cook Children’s cardiothoracic surgeon, performed a complex atrial switch operation, along with an aortic translocation. Now 7, Chacon runs, jumps and keeps up with her classmates on the school playground. According to her mother, Elizabeth Franco, no one would ever know she was born with a complicated and critical heart defect.

Dr. Tam used a printed 3D model of Ivy’s heart to explain his surgical plan to Franco. She said the ability to see and touch an exact model of Ivy’s heart made all the difference in understanding her daughter’s condition and operation. 

“Being able to have this detailed information and provide families with a much better understanding is definitely a game changer,” Dr. Muyskens said.

Since its opening in 2017, the 3D aPPROaCH Lab has been used to prepare for approximately 40 highly complex pediatric cardiothoracic surgeries. It’s also used by other specialties for their complicated cases, including plastic surgery, orthopedics, the emergency department, urology and general surgery.

The future of the lab and its abilities are limited only by the ideas and imaginations of the physicians that use it.

“The sky is really the limit,” Dr. Muyskens said. “It's not so much where I want to go with the lab, but really more about where the surgeons and people who utilize the lab want to go. It’s a very unique opportunity for the way we've structured it here at Cook Children’s in that anybody right now can call us up and say, ‘Hey, I want a model of this, or I want to create something like a drill guide to assist in surgery. Can I do that?’ We're here to help them achieve whatever goal they want.”

Elmer’s pediatric cardiologist described him as the sickest of the sick when he arrived at Cook Children’s just days after he was born in 2002.

“He was cold. He was blue, and he wasn’t moving much, and he wasn’t making much urine. He was having difficulty breathing,” said Lisa Roten, M.D., who has treated Elmer through the years. “He was not getting adequate blood flow to his body, and so his organs were shutting down.”   

Tests revealed the cause: The left ventricle in his heart was undeveloped, a condition known as Hypoplastic Left Heart Syndrome (HLHS). The left ventricle is normally the heart’s stronger side, designed to pump oxygenated blood throughout the body. In HLHS, the left ventricle does not form appropriately.

Doctors worried what damage might have been done to Elmer’s brain, liver and kidneys from the poor circulation and near-fatal high acidity in his tissues. Immediate surgery could not be performed until his organ function improved.  Two weeks after birth, he was able to undergo his first surgery. 

These days Elmer lives with a pacemaker that regulates his heart rhythm. Like most people with HLHS, he tires easily and will ultimately require a heart transplant.

Even so, he stays busy accomplishing major milestones – graduation from Fort Worth’s O.D. Wyatt High School, enrollment at Tarrant County College, a full-time job at Amazon and purchase of a house.

“You never really know why somebody is the one who beats the odds,” Dr. Roten said. “It’s amazing. He’s somebody who’s gone through so much and shouldn’t have survived but did survive, and is making a good life for himself and his family.”

Elmer must take precautions to avoid heavy lifting and overexertion. Yet he occasionally forgets that he has a heart problem. “I just want to feel normal. I just want to be normal,” he said. 

In February to observe American Heart Month, we’re highlighting Elmer in recognition of the nearly 40,000 babies born in the United States each year with congenital heart defects. 

Elmer has shown resilience by achieving big goals in spite of in his lifelong health struggles. And he expresses gratitude for his ongoing care in the Adult Congenital Heart Disease program at Cook Children’s. This is his story.

How to Rebuild a Heart

According to the U.S. Centers for Disease Control and Prevention, about 1,025 children are born each year with HLHS, which affects the leftsided structures where most of the heart’s pumping workload takes place. 

Sometimes the abnormalities are detected in ultrasounds during pregnancy. In other cases the problem isn’t apparent until a few days after birth, when newborns with HLHS start showing a weak pulse, breathing difficulty and bluish or ashen skin due to lack of oxygen. Pulse oximetry screening and echocardiography can help make the diagnosis.

“Mom says that if I wouldn’t have gone to the hospital that same day, I would have died,” Elmer said, translating from Spanish for Brenda Rios.

Treatment for HLHS consists of surgery in three sequential stages that make the heart’s right side the main pumping chamber to the body:

1.     Norwood – Creates a new aorta, allowing the right ventricle to pump blood to the lungs and the rest of the body.

2.     Glenn – Creates a connection between the pulmonary artery and the superior vena cava, directing blue blood to the lungs.    

3.     Fontan – Another change in connections that redirects the Inferior vena cava blood flow, preventing the oxygen-rich and oxygen-poor blood from mixing together in the heart. 

Admitted to intensive care at Cook Children’s, Elmer was two-weeks old when he underwent the Norwood surgery, the first phase to rebuild his heart anatomy.  

Three months later he needed another surgery to open up an atrial septal defect – a hole in between the chambers of the heart – and for placement of a shunt. Elmer’s skin then turned even bluer, so a second shunt was added. When his heart rhythm did not return to normal, a pacemaker was put in.

“We usually think people who have that rocky of a course, they’re not going to be survivors,” Dr. Roten said. “We didn’t know what his long term brain function would be.”

Elmer underwent the Glenn surgery at age eight months. When the Fontan surgery was performed at age 3, his original pacemaker was replaced. At age 6, another surgery was needed to close a hole in his heart that had been deliberately left to aid in circulation. Each of the six bypasses brought the risk of strokes and brain complications, Dr. Roten pointed out. His pacemaker lead was replaced in 2014 and 2018. 

“Elmer is inspirational to the HLHS family because he did beat the odds, and he was one of the worst ones out there,” she said.  

Following the series of surgeries, many babies born with left heart defects regain a normal skin color. But it’s not a cure …. HLHS patients must receive follow-up cardiology care for the rest of their lives because of the risk of heart failure and other complications, such as slow growth and developmental delays. 

In the 40 years since the first successful Norwood procedure, the population of adults with HLHS is small but growing, according to a study cited by the American Heart Association.

Dr. Roten said Elmer will require a heart transplant ultimately. He comes for checkups every six months and will never outgrow the Adult Congenital Heart Disease program at Cook Children’s. She expressed admiration for how hard he has worked at school and at jobs despite low physical stamina.

“He’s had to grow up fast. His tomorrows are never guaranteed,” Dr. Roten said. “Most adolescents have that ‘I’m going to live forever’ attitude. Elmer’s never thought that about himself. But that has not changed his desire to go on with life.”

Warrior with a Kind Heart

In Elmer’s earliest memory of Cook Children’s, he is 4 or 5 years old and having blood drawn. As a child he played soccer by himself – not on a team – in order to protect the pacemaker. 

By his teen years he focused on academics with a special interest in science. Maybe, he thought, some day he could be a pediatric cardiologist. In high school Elmer took dual credit college courses and simultaneously worked evenings at a grocery store.   

Now he takes classes at TCC two days a week while working full time at an Amazon fulfilment center, where he drives a forklift and operates other machinery to lessen the physical aspects of the job. He gets fatigued, he admits, especially when it’s hot. While Elmer doesn’t want his heart defect to be a barrier or excuse, he acknowledges that it isn’t easy dealing with HLHS.   

His advice to others with the same condition? Never give up.

“Don’t let a heart defect stop you from accomplishing whatever you want to do when you grow up. Don’t let other kids or anybody else see you in a different way,” he said. “Whatever goals you have, just keep going at it, no matter what. Because one day you’ll look back and say ‘Wow, I’ve been through this journey. I’ve been through so much.’”

Elmer thinks his friends would describe him as happy and energetic. When he’s not working or studying, he plays chess. In 2021 he bought a three-bedroom house in Fort Worth, where he lives with his mother, stepfather and two younger siblings. 

He was accepted to his dream school, Texas Christian University, but missed out on the scholarship he needed to afford it. That disappointment aside, he’s instead considering the University of Texas at Arlington after he finishes his basics at TCC.

His mother remembers her fear when infant Elmer was fighting for his life and there were no guarantees he would make it. Brenda believes her “warrior” son has a unique purpose in life.   

“She always tells me ‘You have a big heart, even though your heart is undeveloped and it’s pretty weak. You always have a big heart,’” he said.

Elmer remembers following Dr. Roten around her office when he was a little boy. He remembers his surgeon Vincent Tam, M.D., urging him to get straight As in school. 

At one point he belonged to a support group called Mended Little Hearts, where he answered questions from younger patients. He career shadowed Dr. Roten and Dr. Tam because he hopes some day to work for Cook Children’s, the place he calls his second home. Helping others appeals to him.

“Cook Children’s is like half of my life. I grew up there. I met so many awesome staff and doctors and nurses and practitioners,” Elmer said.

Transitioning from pediatric care to the Adult Congenital Heart Disease program was easy, he said. The program is one of only a few formal programs nationwide to offer inpatient and outpatient care for teens and adults who were born with heart defects.

For now, Elmer takes aspirin and a medication to control his blood pressure. He tries to avoid overtaxing his body. Brenda still urges him to be careful with his pacemaker. But he doesn’t want a heart transplant just yet.  

“I think it’s better for me to just stay with the heart I have unless it’s really required for me to get a transplant. Then I would consider it,” he said, laughing. “But until then, I’m pretty happy with my own heart.”

The nearly 40,000 babies born each year with congenital heart disease (CHD), or birth defects of the heart, face a lifetime of surgeries and procedures to keep their hearts pumping properly. But a new, first-of-its-kind, non-surgical treatment now offered at Cook Children’s Medical Center is reducing the number of open-heart surgeries needed for some teenage and adult CHD patients.

Micah Rucker, 29, is one of them. He is the first patient at Cook Children’s to receive the Harmony™ Transcatheter Pulmonary Valve (TPV). It is the first catheter-based valve delivery system designed to treat a leaky native pulmonary valve approved for use in the United States by the Food and Drug Administration (FDA).

Transcatheter balloon expandable valves have been used in patients with previously placed surgical conduits, which is a prosthetic connection between the right ventricle and pulmonary artery. The Harmony TPV is the first valve designed specifically for those patients without a conduit who require pulmonary valve replacement.

In Micah's case, his pulmonary valve did not form correctly. It remained sealed and blocked the blood flow from the heart into the lungs. By the time he was 2 years old, he had already had two open-heart surgeries—one to open his sealed valve and another to expand the size of the right side of his heart. Doctors fully anticipated he’d need another by the time he was a teen. But Micah defied the odds, which bought enough time for technological advances to turn what could once only be done with open-heart surgery into a minimally invasive procedure.

“His father and I were just hoping that by the time he needed a new valve that the technology would get to the point where he wouldn't need open-heart surgery again,” Karen said. “Because we just really didn't want that for him, especially when he was old enough to remember it. He doesn’t really remember his surgeries when he was a baby.

A leaky pulmonary valve, also known as pulmonary regurgitation, allows blood to backflow into the heart’s right ventricle instead of into the pulmonary artery where it travels to the lungs for oxygen. It’s common for children with CHD to have a leaky valve as a result of their defect or previous surgeries.

“Leaking of a pulmonary valve in a child is not usually critical in the newborn or childhood years,” said Dennis VanLoozen, M.D., an interventional cardiologist at Cook Children’s. “They tolerate that quite well initially. So we often trade that early in life in order to relieve an obstruction. But over 10, 15, 20 years of that valve leaking, that’s when we start to see the effects on the heart where we know it is time to place a competent valve.”

Open heart surgery comes with a large incision in the chest wall and requires a multi-day stay in the hospital. Recovery can be long and painful. The Harmony TPV gives patients a welcome alternative.

The procedure is performed by an interventional cardiologist in the cardiac catheterization lab. During placement, a catheter encasing the artificial heart valve is inserted into a vein through a small incision in the leg or neck. It is guided through the vein into the heart’s right ventricle outflow tract where blood passes from the heart into the pulmonary artery. Once in position, the valve is deployed, expands to fit the size of the outflow tract and immediately begins directing blood flow from the heart into the blood vessels connected to the lungs. The catheter is removed through the same vein in which it was inserted.

Patients with right side heart defects typically have irregular outflow tracts that are larger in diameter. The self-expanding aspect of the valve can treat a much wider size range and provides a better fit than previous generations of valves.

The procedure takes about two hours. With just a small incision to insert the catheter, post-op pain is minimal. Most patients are able to go home the next day and can return to their normal daily activities within a week.

“How quickly people recover and bounce back is really the exciting part of doing these in the cath lab,” Dr. VanLoozen said.

Although Cook Children’s is a pediatric medical center, most of the candidates for this procedure are teenagers or adults, like Micah.

“The tricky part about CHD is just because you turn 18 doesn’t mean we are done with you,” Dr. VanLoozen said. “Congenital heart disease is a special thing where you stick with the pediatric side of care with physicians specialized in treating birth defects in adults. Cook Children’s has a program designed just for that.”

It’s called the Adult Congenital Heart Disease program and offers ongoing care for adults with CHD. Scott Pilgrim, M.D., is the program’s medical director.

“I am very excited about this new development in transcatheter pulmonary valve replacement technology and having the ability to do these procedures at Cook Children’s,” Dr. Pilgrim said. “The prospect of another open-heart surgery is sometimes very overwhelming for the adult with congenital heart disease, as many have had multiple prior surgeries already. The Harmony valve offers a relatively non-invasive option to a much wider group of patients who were previously determined to not be candidates for a transcatheter approach. With a recovery time of only one overnight stay, the Harmony valve is a very attractive option, with many patients returning to work within a few days.”

Today, Micah is home where he lives with his mother and grandmother. He still has a few weeks until he is cleared to exercise and ride his bike, but he’s back to doing other things he loves, like helping to care for his grandmother, playing video games, writing and cooking. Steak is his specialty, much to his mother’s delight.

“I have more energy than I used to have, and I’m breathing a little better than I used to,” Micah said.

He and his mom are happy to have avoided another painful surgery. Most of all, they’re grateful for the technological advances that made it possible.

You’d never know Ben—a second-degree black belt in taekwondo who can break wooden boards and concrete with his hands and feet—was born with a rare congenital heart defect called transposition of the great arteries. It’s a condition in which the pulmonary artery and aorta are reversed, changing the way blood flows through the heart and is oxygenated by the lungs. Babies born with the defect suffer a dangerous lack of oxygen that can cause serious complications or even death.

Ben was born three weeks early in Abilene, Texas, where his family calls home. His mom remembers the nurses took him immediately after birth to run tests but assured her not to worry.

“The nurse said, ‘I’ll tell you when to worry,’” said Ben’s mom, Joy Hoyle. “Then she came back and said they were going to check his lungs, but still not to worry. Then, she came back again and said they are going to check his heart and said, ‘Now it’s time to worry.’”

That’s when Ben was transferred by jet to Cook Children’s Medical Center where Joy and her husband, Ed, learned of their son’s diagnosis. At just three days old, Ben underwent open-heart surgery to repair the defect. Since then he’s needed two more surgeries to keep his blood pumping through his heart properly. The most recent was in June 2020 for a pulmonary valve replacement.

“They used a pig valve, so he likes to say he’s 1% bacon,” Joy said with a chuckle.

Ben is full of that type of lighthearted cheer, plus a heap of positivity, confidence and perseverance. They are qualities he says he learned in martial arts.

Ben began training in taekwondo when he was 9 years old. His body was frail then but, as he continued to train, he grew stronger in his health, physical abilities and positive mindset. Now he’s passing all he has learned on to others as an instructor at Team Chip Martial Arts in San Angelo, Texas, where he is also studying graphic design at Angelo State University. Many of his students are shocked to learn their instructor with ninja-like abilities has a serious heart condition.

“That’s how I want it to be,” Ben said. “You shouldn’t be able to tell that I have some sort of underlying condition.”

He’s far from embarrassed about his heart defect. In fact, Ben enjoys sharing his story and all that he’s learned from his experiences, but he wants others to know their differences don’t define them.

“Over a quarter of our martial arts students company-wide have some form of something that makes them different,” Ben said. “We have kids on the spectrum or with disabilities, and adults with medical issues. I’ve had students say, ‘Mr. Ben, I don’t know if I can do this,’ and I’m like, ‘well, buddy, if I can do it and I’ve got a heart condition, you can too.’ And, boom, they get it done.”

A Seamless Transition

Every surgery Ben’s had has been performed at Cook Children’s. Now as a young adult, he’s a part of a unique group of patients who continue to receive care at the medical center even into adulthood through the Adult Congenital Heart Disease (ACHD) program.

Thanks to advances in pediatric cardiology and surgery, many children born with heart defects, also called congenital heart disease, are surviving, thriving and growing up to live full adult lives. But their condition still requires the ongoing care of physicians specialized in treating congenital heart disease. The increasing need for continued care for patients like Ben led Cook Children’s to develop an open its ACHD program in February 2014. The program provides adult patients with congenital heart disease with comprehensive care and management of their disease well into their adult years. Ben is no exception as he’ll likely need more surgery in the years to come.

“The Adult Congenital Heart Disease program at Cook Children’s is now recognized as a medical home for hundreds of adults with congenital heart disease in the metroplex and surrounding area, with specialists dedicated to the care of congenital heart disease patients regardless of age,” said Scott M. Pilgrim, M.D., medical director of the ACHD program. “I am proud of patients like Ben who have developed the autonomy to make informed decisions about their heart health as they transition into adult medical care. It is so rewarding to see the lightbulb go on when the patient understands their heart anatomy and the need for ongoing care.”

Ben transitioned to the ACHD program about two years ago.

“The adult program has been amazing in helping me understand my condition and anatomy,” he said. “It’s a different world now because I’m an adult and need to understand what’s going on in my body. It’s no longer me sitting in an office not knowing what’s going on and all the adults talking. Now I am the adult in the room talking to somebody that knows way more than I do and learning information and understanding the next steps for myself.”

Spreading Cheer

You wouldn’t expect to see a 21-year-old black belt carrying a balloon to every appointment at Cook Children’s, but it’s a tradition the Hoyle family adopted after Ben’s second heart surgery at 14 months old.

“When Benjamin was in the ICU recovering, there was a little boy who was about 5 or 6 in the bed next to Benjamin,” Joy explained. “We all got moved to another patient floor and, one day, I got a knock on the door and it was this little boy with his mom. He said he was getting to go home and he wanted to give his balloons to the little heart baby who was in the bed next to him.”

That small gift made a huge impression on the Hoyle family. Now Ben does the same for a child each time he visits the medical center. Before he leaves, he stops by the cardiac care unit and asks the nurses to give his balloon to a child there.

“I may not be able to change a child’s life by giving them a balloon, but if I can put a smile on their face then it’s 100% worth it,” he said. “I know what it’s like to be sitting in that room not sure what’s about to happen. So if I can give some sort of joy to that kid or those parents, it’s all worth it.”

To other kids like him Ben says to never let your disability get in the way of being a kid.

“Go have fun,” he said. “Your heart doesn’t define you. Go do baseball. Go play sports. Go do martial arts. Go do it.”

Home is many things for different people, but where most people feel ‘at home’ usually comes with a sense of safety, security, and love. That is how Amber feels about Cook Children’s Medical Center. Although she lives more than 500 miles away from the castle with the blue peaks in downtown Fort Worth, she has a story that began (and ended) right where she felt the safest.

In early June, Amber, 40, found herself on the road traveling from Kansas to Texas. However, this was no vacation. She was headed to have open-heart surgery at Cook Children’s. You may be thinking, “But that’s a children’s hospital, how is that possible?”

Amber worked as a nurse at Cook Children’s from 2006-2014 on several different units at the medical center. In 2014, she and her family moved to Kansas, but she still had ties to Cook Children’s. Amber’s sister, Kathleen Powderly, M.D., is a pediatrician at the Cook Children’s Magnolia Clinic.

In the fall of 2020, Amber went for a routine checkup with her primary care physician and after running some tests, she learned she had a heart murmur. After getting an abnormal echo test and being referred to a cardiologist, she learned she had a subaortic membrane that had gone undetected.

“The symptoms I'd been having, I attributed it to turning 40,” Amber said. “I had just started exercising, so I thought some of those symptoms were just part of getting older.”

Knowing she would need surgery, Amber began her search for a cardiologist in Kansas. After that search led to a dead end, she called her sister in Fort Worth for help.

“I was talking to my sister, Kathleen, and she told me that there was a congenital heart program for adults at Cook Children’s, which I didn't know,” Amber explained. “I had been trying to find a surgeon in Kansas and didn’t have any luck.”

Amber’s sister connected her with Scott Pilgrim, M.D., medical director of adult congenital heart disease at Cook Children’s, who performed an evaluation and determined she was a candidate for surgery.

“Amber’s case was a little unique in that she was not diagnosed with her heart problem until later in life,” Dr. Pilgrim said. “Her diagnosis was a subaortic membrane or tissue that had developed underneath the level of the aortic valve. While not necessarily truly congenital, it is something that we do see in children as little as infants, all the way up into adulthood. Our surgeons are very versed in taking care of these types of problems. Her case fell right within our purview and right within our expertise of being able to handle that problem.”

Phillip Burch, M.D., a cardiothoracic surgeon at Cook Children’s, performed Amber’s surgery. On that early Monday morning in June, he met Amber in her hospital room and explained what would take place detail by detail.

“It feels just like coming home,” Amber said. “I loved it when I worked here. I thought it was one of the best places to work. I have always had every confidence in my fellow nurses and the physicians, and I honestly feel more at ease being here than even at the adult hospital back home. I know how skilled and compassionate they are here and I am very confident and happy to be back.”

There was not a dry eye in Amber’s hospital room as the medical staff prepared to wheel her back to the operating room. Amber embraced her husband tightly, as the nerves of being minutes away from open-heart surgery began to get the best of her. Next, she would embrace her sister. As her sister handed her a rosary, they prayed.

“Can I take this into surgery with me?” Amber asked. The medical staff agreed and moments later Amber was on her way. Her family was only able to walk so far before the waiting game began.

“Kathleen let me take her rosary because I’d left mine in my bag,” Amber said. “Faith has always been important to me. We have lost our parents and a sister, and I knew they were there with me. Kathleen even had holy oil with her that she put on me right before surgery and it was automatically calming to me.”

Amber’s successful surgery was followed by a short Cardiac Intensive Care Unit (ICU) stay before she was released to recover at her sister’s home. She spent four weeks healing, but the process was hard on her physically and mentally.

“I have my good days and bad days,” Amber said. “With open-heart surgery, Dr. Pilgrim explained there would be a great occurrence of depression and emotional instability, and I’ve noticed that. My emotions go up and down, one moment I'll be fine and all of a sudden I'll be crying. It's been a lot to take in and I find myself frustrated with not being able to do what I’m used to right now.”

She says while it was nice to be able to visit her sister and spend time with the family in Texas, it was hard to be away from her five children. She spent a lot of time on FaceTime with her children and played games with them on her phone to make the time pass by.

Amber was able to reunite with her family just in time for the Fourth of July, but being back home came with a hard adjustment period.

“It feels so good to be home,” Amber said. “I am still taking it easy. I’ve been using my arms more to push myself up and I even tried driving recently. I have been trying to use those muscles that I haven’t used in a while, I’ve just been sore.”

She says the best part of being back in the comfort of her own home was reuniting with her husband and children. The younger children were fearful and careful not to ‘hurt’ their mommy as they knew she was still recovering.

For now, Amber will continue to take it slow and regain her strength before she gets back to taking care of patients and working long nursing shifts. She says she needs more strength and endurance before she can be on her feet for a long time.

Amber and her sister, Dr. Powderly, say that while Amber gains her strength to get back to work, they will always reflect on the strong team of employees at Cook Children’s that made what could have been a scary experience, seamless.

“From the time that we walked in for registration that morning to when we walked out about nine days later, I can't even tell you the level of exceptional care that we received,” Dr. Powderly explained. “When you work at a place, you have a sense that what you provide is good, compassionate care. When you are then a patient or a family and you see it from the other side, it is just a total validation of why I’ve spent my whole career at Cook Children’s.”

Amber says she agrees with that sentiment, from being an employee to becoming a patient, she is thankful her story started and ended at home.

“Thank you would never be enough,” Amber said. “Every single person was amazing. They are responsible for giving me my life back, and there is no amount of gratitude in the world that I think would cover it. I am very blessed to have been a patient and been a part of an amazing team.”

In 2018, Cook Children’s Health Care System formed a partnership with Covenant Children’s Hospital in Lubbock, Texas, to bring cardiothoracic surgical care to families living in West Texas and eastern New Mexico. The partnership is part of an initiative to make treatment more convenient for patients and families in Lubbock and the surrounding areas. Since its launch, eight children have undergone surgery at Covenant Children’s.

Gunner’s parents, Donavin and Cassie Sanchez, said staying close to home for surgery at Covenant Children’s earlier this month where they had the support of family and friends in the area was a gift to all five of their children. Gunner is a quadruplet, along with siblings Arrow, Cheyenne and Scarlett. Hazen is their 8-year-old big brother.

“Our other kids are being spoiled right now by the whole family,” Cassie said when talking about how Gunner’s siblings fared while mom and dad stayed at their son’s bedside.

Gunner, who turned four on May 3 just days after his surgery, showed no outward signs or symptoms of a heart condition. His parents describe him as a typical rambunctious and outgoing boy who loves dirt, cars and any sport with a ball.

Even so, surgery could not wait.

“If we waited until we could tell something is wrong, we’ve waited way too long,” said Vincent Tam, M.D., director of cardiac surgery at Cook Children’s Medical Center. Dr. Tam is a part of the Cook Children’s cardiothoracic team that travels quarterly to Covenant Children’s to perform surgery.

“If we were to see symptoms in a kid this age, we’re really in trouble because,” he said. “By then, the valve is really messed up, his lungs would be damaged and his heart would have been overworked.”

The hole in the lower pumping chamber, called a ventricular septal defect (VSD), makes Gunner’s heart work much less efficiently, and extra blood flow to his lungs could eventually result in damage. The defect also led to a narrowing of his aortic valve opening due to a buildup of scar tissue under the valve. As it gradually builds up over time, the scar tissue limits blood flow and can lead to a leaky aortic valve.

“If we don’t intervene, the subaortic membrane narrowing will persist, and it will actually progress over time so that months and years from now the narrowing will be even worse,” Dr. Tam explained. “It will also begin to negatively affect the function of the aortic valve. So, we don’t want things to get to the point where the aortic valve itself is in jeopardy. The extra blood flow from his VSD opening in the lower pumping chamber means more work for his heart.”

It takes a diverse team of clinical professionals from both Cook Children’s and Covenant Children’s for kids like Gunner living in more rural areas of the country to have access to this type of specialized surgical care.

“Heart surgery is teamwork, Dr. Tam said. “It’s not just me. We need a whole team of people from cardiac anesthesia to operating room staff to someone to run the heart/lung machine to ICU doctors.”

Gunner’s surgery was a success, and his parents are hopeful for his future.

“I hope he can be just like his big brother,” Gunner’s mom said. “I hope he can run and play baseball and be the healthy little boy he deserves.”

The sweetest gift of all in this unique collaboration is that Gunner was discharged from the hospital on his birthday, just in time to celebrate with his brothers and sisters.

Learn more about Cook Children's partnership with Covenant Children's here.

“We're learning more and more about coronavirus and how it affects the body in general, and particularly how it affects the heart,” said Deborah Schutte, M.D., medical director of Cardiology at Cook Children’s. “We're now learning that the virus can attack the heart much like many other viruses and kids can get what's called myocarditis, which is inflammation or swelling of the heart.”

With increasing research in this area, the American Academy of Pediatrics (AAP) recently released its recommendations for safe return to sports and activity. They suggest all children and adolescents with exposure to COVID-19 rest for a minimum of 14 days, regardless of whether or not they had any symptoms. If a child had mild symptoms (fever, cough or runny nose for less than three days), they should rest for at least 14 days after illness.

“They should talk to their pediatrician and they need to stay out of vigorous activity or sports for 14 days after they're asymptomatic or after exposure,” said Dr. Schutte.

For kids with moderate symptoms (those that last longer than three days), further examination, such as an electrocardiogram (EKG), may be required. The AAP also recommends waiting at least 14 days after the symptoms subside and obtaining clearance from a primary care physician before returning to exercise.

If a child had severe illness due to COVID-19 and/or multisystem inflammatory syndrome in children (MIS-C), restriction from activity is recommended for three to six months.

“It's very important for us to be able to assess the patients before they return to sports,” Dr. Schutte explained. “We know from other viruses that cause myocarditis that patients who decided to participate in sports, and perhaps have had a viral infection in their heart, there can be serious consequences, even death, related to sports activities or vigorous exercise.”

While this may sound scary, Dr. Schutte says parents shouldn’t be afraid to let their kids exercise. She says physical activity is important for children and teens, especially now.

“As a parent of two boy athletes, I totally get that you're potentially scared to send your child back out on the field,” she said. “I think exercise is so important for everybody, but kids in particular. It helps combat the isolation they might be feeling right now from having to either quarantine or be socially distanced all the time. And it can also help with anxiety and depression, in addition to the physical benefits of just maintaining a healthy weight and staying fit.”

She says in most cases, the benefits of getting back out onto the field outweigh the risks. But, she adds, it’s an individual decision for each young athlete and their family.

“Parents need to take into consideration what sport it is because there are sports that are considered high-risk like football and wrestling,” she said. “You can imagine you're face-to-face with your opponents as opposed to something like soccer or volleyball, which are considered medium risk, as opposed to golf where they can safely distance themselves.”

Parents also need to consider who the athlete interacts with and whether there’s a high-risk individual in the home, like an elderly grandparent who may be more susceptible to seriousness illness if exposed to COVID-19.

“Unfortunately, it's not easy. It's a very complex decision that needs to be made within the family,” Dr. Schutte said. “But I certainly would not discourage it.”

Surgery teams from the two hospitals joined together in Lubbock on Monday to perform two cardiothoracic procedures on pediatric patients. The partnership is part of an initiative to make treatment more convenient for patients and families in Lubbock and surrounding areas.

“Cook Children’s and Covenant Children’s developed a partnership, which allowed Cook Children’s to come to Covenant and perform procedures on a recurring basis,” said David Gray, D.O., chief medical officer of Covenant Children’s.

Vincent Tam, M.D., medical director of cardiothoracic surgery at Cook Children’s, performed both surgeries at Covenant Children’s. He traveled to Lubbock this week, along with seven other members of the Cook Children’s team. With the help of the surgical team from Covenant Children’s, Dr. Tam repaired the hearts of two children, including that of four-year-old Adrian Rosalez. Adrian was born with a vascular ring, a malformation of the aortic arch in the main blood vessel leading from the heart that partly or completely encircle the trachea or esophagus. Thanks to the collaboration between Cook Children’s and Covenant Children’s, Adrian is now recovering at home in Lubbock.

“Heart surgery is not a simple thing, I can’t take my suitcase of instruments, come to West Texas and do surgery," Dr. Tam said at a press conference at Covenant Children’s on Tuesday. "Heart surgery requires a large team of people, it requires a significant collaborative effort.”

Without this partnership, Adrian and his family would have had to travel to Dallas/Fort Worth, or another major medical hub to receive his surgery.

Covenant Children’s and Cook Children’s formed the joint partnership between the two hospitals in 2018. The plan allows Cook Children’s surgery team to perform cardiothoracic procedures on pediatric patients at Covenant Children’s once every quarter.

“I had my chest bone ripped open. It’s going to hurt,” Martin, 21 years old, said. “For a little while, I wasn’t sure if I had done the right thing. But looking back on it, I’d do it again. It may not have been the smartest choice, but it’s the one I made. It’s the one I’m living with, and I’m happy with it.”

The choice Martin made wasn’t based necessarily on health or even convenience. It was to continue to dive. Since he discovered diving at 6 years old, the sport became Martin’s passion. He won the UIL 6A State Diving Championship as a senior at Midland High, became the first full-time diver in school history at Texas – Permian Basin, and qualified for the NCAA Division II Championship in college. Now he wants to achieve one more thing – a national championship.

And all the while he’s competed at the highest level, he’s also been a heart patient at Cook Children’s. Martin has Shone’s Complex, a rare congenital heart condition that involves multiple valve problems. He received his first heart surgery at only 6 days old.

His doctors have balanced his love for his sport with what’s best for Martin’s health.

Last year, Martin received his latest surgery. Prior to the operation, doctors gave him two options. The smart choice for most people is a mechanical valve, meaning he may never need another surgery again. Once he has that surgery, Martin needs blood-thinning medication for the rest of his life. Running, walking or riding a stationary bike would be OK with that medication. Still, more extreme sports, including diving, could place Martin at a high risk of life-threatening bleeding.

Martin chose the second heart valve replacement option: a prosthetic, or tissue, valve. With the tissue valve, Martin will need another surgery someday, maybe even within the next years. Still, he won’t have to take blood thinners.

Most importantly, for him, at this point in his career, the prosthetic tissue valve allows Martin to continue to dive.

“My parents were in the room with me, and I didn’t even talk it over with them. I was like I know what I’m going to do. I’m signing up for a second (surgery),” Martin said. “So I went and got a prosthetic valve, a tissue valve. As soon as I decided that I said, ‘OK, this is my next to last surgery. Hopefully, I will never be getting another open heart surgery … after the next one.’”

Scott Pilgrim, M.D., a cardiologist and medical director of the Cook Children’s Adult Congenital Heart Disease program, began seeing Martin in 2018. Dr. Pilgrim said he wasn’t surprised by Martin’s decision to go with the tissue valve. Dr. Pilgrim knows that the choices they are making center around Martin’s desire to compete at the highest level.

“We’ve had very long conversations concerning Garret’s heart problem. We’ve had some interesting discussion points about what his long-term plans are with regards to diving,” Dr. Pilgrim said. “It’s my understanding that he’s quite good at what he does, and we didn’t want to remove him from what he loves. And so we are trying to make a decision that’s best for him medically, but also allow him to achieve the goals that he wants to go for in his life. I think that’s where we were in deciding to put in a bio-prosthetic valve or a tissue valve.”

As he arrives at Cook Children’s Mansfield Urgent Care and Pediatric Specialties clinic, Martin is the oldest patient on that particular day. With his scruffy beard and sweat pants, he looks like exactly what he is – a college student. Still, his age doesn’t make him feel any less at home at Cook Children’s.

“When I was a kid, this place made me feel safe, and as an adult, I know that this is the best place I could be for whatever I need,” Martin said. “I love it here. Now don’t get me wrong. I don’t want to stay, but if I have to be at a hospital, this is the only hospital I want to be at.”

Martin appreciates everything done for him at Cook Children’s. As he heads toward the end of his diving career, he has only a few goals left to accomplish. One of those is winning a national championship.

Then he can move on with a new life, making decisions based solely on his health. But don’t expect him to slow down. He’ll only be beginning the next chapter of his life, with a major in mechanical engineering.

“You don’t have to let anybody limit you. The only person that can tell you what you can and can’t do is you.” Martin said. “Granted, if you’ve got a condition, you need to be mindful of that. Make sure you take of yourself. But if you know you can do something, don’t let someone tell you, you can’t.”

That’s good advice that he’s seen first-hand from his medical team at Cook Children’s.

1. The pain is "crushing" or pressing down.
2. There are other symptoms like passing out, nausea or skipping/racing heartbeats.
3. The pain is brought on by exercise.
4. There is a medical history that would worry you (examples are a history of heart disease, Kawasaki disease or Marfan syndrome).
5. There is a history of a murmur. 

And here are 5 other common causes of chest pain:

1. Muscular or chest wall pain. The pain comes back when you touch their ribs or chest.
2. Reflux. The pain is after meals or described as burning.
3. Anxiety. The pain is associated with stressful situations.
4. Lungs. The pain is associated with a deep breath or there is a history of asthma.
5. Who knows? It's fairly common that we can't figure out where it came from but this should only be said after everything else has been considered or checked for.

By Daron Aldridge

For Heather Giattini, RN, Cook Children’s holds a special place in her heart. Less than two years ago her two-and-a-half year son, Brooks, had his first open-heart surgery to address his aortic stenosis (a narrowing of the heart’s aortic valve). It was then that she witnessed firsthand the power of the love and caring Cook Children’s staff and physicians give to their patients and families.

Even though she was a nurse in the adult hospital world at the time, she no more got home from discharge, looked at her husband Matt and said, “I HAVE to work there!” The opportunity finally presented itself and Heather joined Cook Children’s as a cardiovascular surgery nurse earlier this year.

Her desire to work here is simple. She explains, “I wanted to be a part of making people feel the way they made me feel. From our doctors – Dr. (Vincent) Tam and Dr. (Lisa) Roten – to the entire staff that took care of us, it was all amazing. This is where I knew I belonged.”

It wasn’t just Heather who belonged here. As fate would have it, following a recent routine checkup with Dr. Roten, his parents were faced with the reality that a now 4-year-old Brooks would need another surgery. Even though they had hoped it would be years before he would need another surgery, Heather and Matt found solace in the fact that they knew Cook Children’s was the place Brooks belonged also.

But this time, the surgery would be a little different. Thanks to organ and tissue donations and the hand-in-hand work of Cook Children’s and CryoLife, Brooks would be getting a new valve in his heart that will hopefully mean this is the last surgery this young boy will need for decades.

The tissues, like the ones that are helping save Brooks’ life, are donated by families, who have lost loved ones and want to bring joy and hope out of their loss. Through CyroLife, these donations are cryopreserved for 10 years. This means they are able to positively influence and possibly change the lives of children, who aren’t even born yet. When these families make such a decision to be organ and tissue donors, they truly do “Donate Life.” Please visit donatelife.net to learn more about the life-saving importance of the selfless act of organ and tissue donation.

To celebrate the monumental impact such donations can have on patients, Brooks is the first proud recipient of the Donate Life: Recipient pin from CryoLife. The pin, along with similar pins that surgeons and nurses wear, are a quick way to show the world that organ and tissue donations can save lives.

As Brooks’ dad Matt said, “Most people think about the large organs when they think about donation but tissue donations may be small in size but can have a huge impact on lives.”

Amy was born with hypoplastic right ventricle, severe tricuspid valve stenosis and transposition of the great arteries and had a shunt (Blalock-Taussig (BT) placed at a little over a year old. At the age of 3, her family took her to Birmingham, Ala. for the Fontan procedure. The Fontan is the last of a series of three surgeries to rebuild the heart and redirect the way the blood flows.

The fact that Amy had to travel for the Fontan shows how far the Cook Children’s Heart Center program has grown over the past three decades. This was before Vincent Tam, M.D., took over as medical director of Cardiothoracic Surgery. Today, he diagnoses and treats patients with some of the most difficult heart and cardiovascular defects.

Over the past 30 years, James "Hud: Allender, M.D., Susan Hess, M.D. and now Scott Pilgrim, M.D., all served as Amy’s cardiologist.

“I finally graduated to Dr. Pilgrim when he began working at Cook Children’s since he specializes in adult congenital heart disease,” Amy said. “I had the conversation with him about a safe way I could become a mother. He suggested IVF (in vitro fertilization) with a surrogate would be a safe option. Since I have lived a very healthy and normal life as a cardiac kid, I thought this would be a safe option to keep my good health intact. I didn’t want to put myself or my child in danger.”

Dr. Pilgrim believes one of the more rewarding aspects of his job as the medical director of the Adult Congenital Heart Disease Program at Cook Children’s Medical Center is making sure that adult survivors of congenital heart disease have an opportunity to realize their desire to start and raise a family.

“While pregnancy in this population is certainly not without challenges, a safe and healthy pregnancy and delivery is entirely possible for most women with congenital heart disease with appropriate oversight,” Dr. Pilgrim said. “Pre-pregnancy risk assessment and management of high risk pregnancies due to maternal congenital heart disease has become an increasingly important aspect of our program. Understanding that individuals with congenital heart disease have an increased risk of having children with congenital heart disease underscores the importance of fetal screening for these high risk mothers”.

Amy’s sister-in-law, Amanda, agreed to become the surrogate. Early in her pregnancy, doctors found that Rusty and Amy Suson’s baby girl would also face a heart defect. A fetal echocardiogram performed at Cook Children’s found something wrong with the baby’s pulmonary artery. Dr. Tam met with the family and moved forward to a 39-week induction.

As soon as Madilyn was born, she went straight to the NICU at Cook Children’s.

Amy was relieved to find that Dr. Pilgrim was on call that day to care for her daughter. Dr. Pilgrim checked on Madilyn, then ordered and read her first echocardiogram. He then made the diagnosis of pulmonary atresia with a ventricular septal defect (hole in the wall of the heart). “It was on that day that I asked him if he would be willing to take Madilyn on as a patient too and he agreed,” Amy said.

Madilyn had her first open heart surgery at 3 days old and will have another one likely in April.

“Eventually, Madilyn and I will have mother-daughter joint cardiac checkups,” Amy said. “As a patient of Cook Children’s and part of their cardiac family, I knew Madilyn would be in good hands. The team in the Cardiac ICU and step down did an amazing job. I know that Madilyn is getting the best possible care.”

And sitting atop that reign of longevity are four cardiologists who have all been at the medical center for more than 20 years of experience.

Hudson Allender, Richard Readinger, Steven Lai and Susan Hess each came to Fort Worth looking for new challenges and with one common goal: taking care of children.

"If you walk into a room and see a 6-month-old child, and it doesn't make you beam, you shouldn't go into pediatrics," Dr. Readinger said.

Hud Allender, M.D., arrived at Cook Children's in April 1983, after training at the Children's Hospital of Philadelphia.

Dr. Allender breezes over what brought him here with modesty, but basically somebody knew somebody who knew that a quality, general pediatric cardiologist was badly needed in Fort Worth.

Ralph Tierney, M.D., came to Fort Worth in 1976 and was the only pediatric cardiologist in town. Dr. Allender joined in 1983 and two of them provided care for the pediatric heart population in the area.

"The lifestyle wasn't too bad. We didn't have the volume we have now," Dr. Allender said. "The worst part I was still pretty new when Dr. Tierney took two weeks off that year at Christmas. So I was basically doing it alone, carrying the whole work load for two weeks."

Two years later, Stephen Lai, M.D., joined his friend Dr. Allender and the two young cardiologists began to establish themselves in the community as the young, go-to-doctors for kids with heart conditions.

"Hud and I trained together. When the opportunity arrived for me to come down here, I found a good environment to work," Dr. Lai said. "All the pediatricians and specialists were committed to giving good patient care. I found Cook Children's to be a bright and congenial place to work. Since then, we have obviously grown and improved incredibly over the year. I'm honored we work here."

The two young physicians saw things growing rapidly over the next couple of years. They were committed to bringing in the best people and latest in technology.

"If you didn't try to do things the best you could, you found yourself falling behind in the field very fast," Dr. Lai said. "Everyone was so committed to their job and keeping up with everything that was happening. Things were moving so fast. It was very exciting. We felt it then and still do today, that any child will receive as good a care at Cook Children's as anywhere else in the country. We're all very proud of that."

Dr. Allender and Dr. Lai were offered spots at other academic hospitals at the time, but they couldn't be lured away and were committed to helping the growth of pediatric cardiology at Cook Children's. They knew they were in the right place for keeping up with the times and working to get the best possible staff.

"I feel proud of what we were doing," Dr. Lai said. "The standard of care is so good. We brought in great surgeons we could be proud of. There were other places that had good cardiologists, but it was the surgeons who separated us from other institutions. Today, I think our surgeons rival any place in the country. There were things we couldn't provide early when we were here, but the hospital leadership was committed to bringing in everyone and everything that was necessary to be one of the best cardiology programs in the country. You still see that today with our leadership. You see the results of what we were building back then in what the Heart Center has become today."

Dr. Lai may sell himself short saying he's proud of the "small part" he played in establishing today's program. But you can still hear that same enthusiasm he brought with him 30 years ago when he talks about the young cardiologists and heart surgeons who currently walk the halls of Cook Children's.

He speaks in awe of the advancements in imaging and the advanced technology to support pre-surgical planning with the new 3D virtual viewing and printing at Cook Children's. Dr. Lai speaks like a proud dad when he talks about how much exciting work is being done now within the Heart Center program.

Richard Readinger, M.D., echoes those sentiments. Dr. Readinger's father was a physician and always steered him toward the profession.

"I looked at my Dad and thought 'We'll never have as much medical advancement as during my Dad's career,' but in fact, we've out-stripped those advancements. We will see even more major changes, in genetics for example. I have no idea exactly what the future holds, but it's incredibly promising.""

Dr. Readinger spent 10 years at Arkansas Children's Hospital before arriving at Cook Children's in the late 1980s.

By this point, Dr. Tierney had retired and it was only Dr. Allender and Dr. Lai. Dr. Readinger saw the possibilities of a cardiology program in Fort Worth, but felt the program was stagnant until the merger of the two hospitals at the time became what we know today as Cook Children's.

"In a lot of ways, Fort Worth's cardiology program was still in the dark ages," Dr. Readinger said. "It was a basic, minimal program. It was moving along very slowly and without the facility we couldn't do much. Once the facility came into place, a lot of other things started happening quickly."

From the dark ages, Dr. Readinger said the program has come light years into the established program currently found at Cook Children's.

"We're very state-of-the-art now," Dr. Readinger said. "In pediatric cardiology, your program lives and dies by your cardiac surgery team. If you don't have that, you are never going to develop. Gradually, we were able to get to that point once Vincent Tam arrived. Once Dr. Tam came here, we were really able to develop our program. We really owe everything we have become to him."

With three cardiologists in place and the program rapidly growing, it was time to add someone new. And while this physician was the last of the four to arrive, Susan Hess, M.D., achieved a first in the area. Dr. Hess was the first female pediatric cardiologist in Tarrant County.

"It is an accomplishment that makes me very proud," Dr. Hess said.

When Dr. Hess graduated from Baylor College of medicine in 1985, she said about 25 percent of the class were women. When she arrived at Cook Children's she was used to being the minority, but she was pleased to see she was welcomed with open arms.

"Everyone treated me extremely well," Dr. Hess said. "There was a great camaraderie among the physicians at Cook Children's. I was treated well by everyone, not just the physicians, but all the support staff was very welcoming as well. We all knew everyone's name back then – the nurses, environmental services, respiratory care, everyone."

All the doctors talked to for this article agree the biggest change during their tenure at Cook Children's have been the advances in subspecialization seen today.

"We wore so many different hats when I arrived at Cook Children's," Dr. Hess said. "As cardiologists, we spent time in post-operative care with patients. We interacted with anesthesiologists. Cardiac anesthesiologists were just getting going back then. Many times it was a general anesthesiologist who did the surgery. We all worked closely with them. We didn't have cardiac intensivists then either. We worked with the general intensivists. Dr. (Britt) Nelson was the head pediatric intensivist at that time. "

Dr. Hess brought with her another first. She was the original cardiologist trained to perform fetal echocardiograms before Lisa Roten, M.D., "took over the torch" to lead the program.

In retrospect, Dr. Hess says the Cook Children's administrators were visionaries in forming Cook Children's Health Care System and adding a physician network, home health, medical center and other companies all under one umbrella.

Even though she's been at Cook Children's for more than 25 years, Dr. Hess says she's still a bit in wonder of where she works. She says there's not a day that goes by when she walks the halls of the medical center she doesn't thinks about how much growth she's seen not only in the size of the facility, but the advances in medical care.

"I always thought, and still think, that Cook Children's was such an amazing place," Dr. Hess said. "The focus on patient care in 1993 was unsurpassed and the dedication of all the individuals working at Cook was surpassed by no one. I thought the family-focused care was fantastic. We've grown a lot, but I think we've managed to keep that aspect of care."

Through the years, the cardiologists interviewed for this article have seen patients grow up. They've received graduation announcements, wedding invitations, personal letters of thanks and so much more. Those achievements leave Dr. Hess proud of the role she has played in her patients' recovery.

"It's a calling, not a job," Dr. Hess said. "You must have compassion and be able to relate to and help people."

Much has changed over the years, but the legacy of these pioneers remains: taking care of children.

Watch the story on WFAA by clicking here. 

The new three-dimensional lab for the planning and printing of congenital heart disease (3D aPPROaCH Lab) uses advanced technology to support pre-surgical planning and family education for patients with complex heart conditions. This is accomplished through the use of both 3D virtual viewing and 3D printing. Cook Children's is one of the only pediatric healthcare facilities in the United States to combine these technologies. This cutting-edge technology allows cardiologists and cardiothoracic surgeons the ability to fully understand a patient's complex heart defect and plan their procedures and surgeries to the finest of details. It also allows for doctors to practice and perform procedures prior to the patient entering the operating room. Click here to learn more.

When Patti Wilson was pregnant with her daughter Melanie in 1980, health care and technology looked a whole lot different than it does today.

Routine sonograms did not exist and there was no way for expectant mothers to know whether anything was wrong with their baby until the child was born. Up until labor, Patti’s pregnancy had been text book and no one had any reason to suspect anything was wrong with Melanie.

However, on June 3, 1980, when Patti went into labor, everything changed.

Doctors began noticing Melanie’s heart would stop every time Patti had a contraction. They originally thought the umbilical cord was wrapped around Melanie’s neck, but after an emergency C-section was performed, Patti and her husband learned their newborn baby girl was facing a life-threatening diagnosis.

The day after Melanie was born; she was transferred to Cook Children’s, which was called Fort Worth Children’s at the time. The prognosis Melanie’s parents received was bleak.

At 5 days old, Melanie had her first heart catheterization. This first procedure allowed doctors to diagnose Melanie with a combination of congenital heart defects that included transposition of the great arteries, ventricular septal defect and pulmonary stenosis. She would need multiple procedures to fix the structural abnormalities in her heart but the catheterization temporarily fixed the problem to postpone surgery as long as possible.

Melanie was a year old when she had her first open heart surgery at Cook Children’s. The procedure was called the Rastelli procedure and the surgeon performing the surgery had practiced under Giancarlo Rastelli himself before coming to Cook Children’s. Throughout her life, Melanie had additional surgeries at 3, 10, 16 and 27 years old. She also underwent multiple heart catheterizations and procedures.

Over the years, Cook Children’s has become a home away from home and Cook Children’s cardiologist Richard Readinger,, M.D, , who has followed Melanie since she was 8 years old, feels more like a family member a doctor.

When asked about how her diagnosis affected her life as a child, Melanie said it was all she ever knew. She learned about her diagnosis as a child learns most things – by experiencing it as time goes on. At age 11, James “Hud” Allender, M.D., another Cook Children’s cardiologist, sat her down to explain that her mom may not always be with her if there is an emergency and she must know and understand her own diagnosis. It was at this point that Melanie remembers truly understanding what she had been coping with up until then.

Since her last procedure at age 27, Melanie has had no complications. Even though she’s an adult, she continues to be followed by cardiologists at Cook Children’s who are skilled in treating patients of all ages with congenital heart defects. With the continued advancements in pediatric cardiology, children with congenital heart defects are not only surviving, but growing up to become adults who lead rich, full lives. Cook Children’s Adult Congenital Heart Disease program is one of only a few formal programs nationwide to offer inpatient and outpatient care for patients from the moment they are born all the way into adulthood.

But the story doesn’t end there.

Due to Melanie’s diagnosis, she was told that pregnancy would likely be too risky. Her doctors were unsure if her heart would be strong enough to carry a baby to term.

But, some things are left to fate and Melanie began to have vivid dreams that she was feeding twin girls that she knew had to be her own. She would wake up absolutely bewildered because she knew it wasn’t a possibility. Fast forward a few weeks and Melanie and her husband found out the shocking news that she was pregnant.

Melanie immediately made an appointment with Dr. Readinger where he performed an EKG, echocardiogram and an exam and said, “It’s the strangest thing. Your heart appears to be in the best shape it’s ever been in. If you’re going to have a baby, now is the time.” The sonogram revealed that Melanie was actually pregnant with twins as her dreams suggested. Unfortunately the one baby’s heart never fully formed and at 8 weeks another sonogram revealed that the baby had been absorbed.

Having wanted to create a girl name from two men’s names, Melanie and her husband already had a plan when they found out 15 weeks into the pregnancy that they would have a baby girl. Rossleigh is named after her great grandfather, Ross, and her grandfather, David Lee.

Melanie’s pregnancy went smoothly physically, but it was incredibly draining emotionally. At the beginning, Melanie and her husband felt as if they were only receiving disheartening news. At week 18, the couple was informed that there was an issue with Rossleigh’s heart and the perinatologist could only see one kidney. Luckily, her second kidney would be detected on a later sonogram.

At week 22, a fetal echo was performed at Cook Children’s where cardiologists could diagnose Rossleigh’s heart defect while she was still inside Melanie. Fetal echocardiography didn’t exist when Melanie was born. A fetal echo allows doctors to see a baby’s heart while it’s still in the womb. Doctors can make the diagnosis and work with the surgical team to come up with a treatment plan even before birth. This technology gives the gift of time, both for the surgical team and for the family.

When the fetal echo was performed, Rossleigh was originally diagnosed with Truncus Arteriosus with a ventricular septal defect but at birth, that diagnosis would change.

Rossleigh Claire Dewey was born on Sept. 26, 2012 and was immediately transferred to the Neonatal Intensive Care Unit at Cook Children’s. An echocardiogram would show that her diagnosis was actually Tetralogy of Fallot and pulmonary atresia. Only five days after birth, Vincent Tam, M.D., Cook Children’s medical director of Cardiothoracic Surgery, operated on Rossleigh’s heart. She stayed in the hospital for 29 days, ironically, in the exact same surgery recovery room that Melanie had stayed in after her most recent surgery, and has had no procedures since. She could end up needing another procedure in her teenage years but right now, she is living life like any other 5 year old.

The bond between a mother and daughter is always special and unique, but Melanie and Rossleigh’s bond is even more unique because of their shared experiences.

These days, because both Melanie and Rossleigh are still being followed by Dr. Readinger, they have annual mother-daughter cardiology appointments. Melanie said that while one is getting their echo, the other will hang out in the waiting room and vice versa. A unique mother-daughter experience that most don’t have to share but they make the best out of a tough situation.

The Dewey family is forever grateful to Dr. Readinger and the care and compassion that he has shown both Melanie and Rossleigh throughout their medical journey. Melanie bragged on his ability to appropriately explain and literally sketch out the most complicated situations to both generations of heart patients.

Even though nearing retirement age, Dr. Readinger wanted to be the one to treat Rossleigh so that he could be involved in both of their care. He has made a great impact on their lives and the family is forever thankful.

As Melanie reflected back on everything she’s been through, she explained, “I have such a unique viewpoint going into this situation. I’ve been on both sides, as a patient who was scared to go into their own heart surgery, as well as the mom of a child with heart issues. Both are frightening in their own ways but I was able to gain the courage to push through these circumstances because of my faith and an amazing team of skilled doctors in nurses.”

As we look back over Cook Children’s 100 year history, Melanie’s story is proof of not only how many medical advancements have been made but how things are literally changing each and every day. If Melanie was born 10 years earlier, the Rastelli procedure wouldn’t have existed and she would have died as an infant. However, if she was born 10 years later, she would have been able to undergo a newer procedure, at the time, called the Nikaidoh procedure where they could easily switch the two sides of the heart. It’s likely she would have needed just the one surgery rather than five. Plus, she would have had the added benefit of the experience of Dr. Tam and Hisashi Nikaidoh, M.D, who created the procedure, and have the largest combined experience of aortic translocations in North America.

These advancements are even more apparent with Rossleigh’s journey thus far.

All of these medical advancements are not taken for granted at Cook Children’s and we know that we could not have made these strides without your help. Our generous donors and supportive community allow us to help Melanie and Rossleigh to live their lives to the fullest, despite their complications. As you join in our celebration of 100 years, remember who we are really celebrating – patients like Melanie and Rossleigh, and also, you. Thank you for being the 1 in our 100.

Celebrating Cook Children's Centennial

Cook Children's is turning 100 and will be celebrating all year! Don't miss out on the fun throughout 2018. Enjoy unique stories, parades, special guests, and community events across Fort Worth. We hope that you can share in some our celebrations because you're the 1 in our 100!

Celebrate with us

Before Waylon could receive the heart surgery he so badly needed, his parents learned their surgeon was leaving the area. The Guidrys were suddenly faced with uprooting from their home in Fate, Texas (Rockwall County) and taking their very sick 6-month-old son out of town for surgery, most likely to either Houston or Chicago. Waylon was born at 27 weeks and 3 days with a rare heart condition called Tetralogy of Fallot, which creates obstruction to blood flow to the lung and is associated with a hole between the pumping chambers of the heart .

As they considered their options and prepared to pick up their lives, the phone rang one afternoon. It was Waylon’s cardiologist to tell them a new heart surgeon, Vinod Sebastian, M.D., would take on the case at Cook Children’s Medical Center in Fort Worth.

“Jordan and I didn’t know what to do,” Katie said. “We researched our options and we just couldn’t make up our minds. When we got the phone call, we were so relieved. Dr. Sebastian received all of Waylon’s history and was confident he could repair the Tetralogy of Fallot with one surgery and also spare his pulmonary valve, which traditionally has to be cut open and resected during this repair.”

The family arrived at Cook Children’s on Nov. 28, 2016 and Waylon underwent heart surgery on Dec. 14. Tetralogy of Fallot is a rare heart defect that occurs in about 5 out of every 100,000 babies.The surgery is a complicated one because the congenital heart disease results in four main congenital heart defects:

• Ventricular septal defect (VSD)
• Override of the aorta over the VSD
• Right ventricular outflow tract obstruction
• Right ventricular hypertrophy

ifelong monitoring is required due to the increased incidence of arrhythmia, exercise intolerance and reduced right ventricular function.

Often times when the surgery is performed, surgeons cut open and resect the pulmonary valve in the baby’s heart. If that happens, it usually means a heart surgery later in life to replace the valve. That was not the case for Waylon.

“As far as Waylon’s heart, his long-term prognosis is excellent,” Dr. Sebastian said. “Waylon is unlikely to need any further cardiac surgical intervention. In the past, Waylon’s condition was incurable. Even 10 years ago, the surgical repair routinely involved cutting open and resecting the pulmonary valve. His heart surgery is very gratifying because his heart problems are no longer an issue.”

Waylon and his family will face other non-cardiac health issues in the future, but for now the family feels very fortunate to have found Cook Children’s and Dr. Sebastian.

“He’s doing great now,” Katie said. “We are so grateful and blessed for having this opportunity to come to Cook Children’s and for our son to receive all the help he needs."

Waylon has been at  home now for more than two months and Katie is busy planning his 1 year old birthday party on May 30.

About Dr. Sebastian

Vinod Sebastian was born and raised in India and has pursued specialty training in the US in surgery, cardiothoracic surgery and pediatric cardiac surgery. During training he realized his passion of becoming a pediatric cardiac surgeon and the unique ability to provide life altering treatments to neonates, infants, children and adults with congenital heart disease.

He trained at Stanford University with Frank Hanley and VM Reddy in the field of pediatric cardiac surgery. During this time he trained in techniques of “single stage unifocalisation” and “extremely low birth weight cardiac surgery” at one of the largest practices in the world.

Dr. Sebastian is happy to be back in Texas at Cook Children's and providing pediatric cardiac surgery services in the Dallas/Fort Worth area.

In his spare time, he enjoys being outdoors, reading, watching cricket, tennis and swimming.

About Cook Children's Cardiothoracic Surgery Program

When it comes to your child, any kind of surgery is concerning. When that surgery is related to the heart, it can be a very frightening time. The cardiothoracic surgeons in the Cook Children's Heart Center are recognized for their skill and expertise. And, because they perform an average of 400 surgeries each year, they know how challenging it is for you and your child, and they will work closely with you to ensure you understand all your child's surgery will entail and the risks involved in order to provide the best plan of treatment. Click to learn more about the program.

Marc Keralla knew he didn’t have much time left to prepare before taking a shot at his goal. An avid cyclist for 25 years, he’d soon be on his way to St. George, Utah to compete in the Huntsman World Senior Games.

At least that was his plan, anyway.

On Aug. 29, 2016, the Dallas business executive wasn’t feeling his best, but he still made time for a workout at a cycling studio in Richardson. Then it happened.

Carey Cribbs,M.D., an emergency room physician at Cook Children’s Medical Center, had just finished the same workout. Preparing for an Ironman triathlon, she was about to leave the studio for a run when she heard someone yelling.

“I heard ‘Dr. Cribbs, I need you!’” she said. “When I walked out of the locker room, I saw him on the ground.”

Dr. Cribbs says the coach, Richard Wharton, was already on the phone with 911. They knew first responders were on the way, but needed to start CPR immediately.

“I didn’t feel a pulse so I asked Richard if he’d rather do chest compressions or rescue breathing. He said chest compressions, which was good because I’m only 5 feet tall.”

For several minutes, they worked together to keep Marc’s lungs moving and blood pumping until the Richardson Fire Department arrived.

“When the firemen walked in, it was like ‘the cavalry is here!’” said Dr. Cribbs.

The entire ordeal lasted less than 10 minutes, but Dr. Cribbs says it was a totally humbling experience.

“I’ve been an emergency room physician at Cook Children’s for 28 years, but I have never performed CPR out of the hospital before,” said Dr. Cribbs. “It really makes you appreciate our first responders and the things they do to save lives. I’m used to having everything in perfect order and they’re doing this on kitchen floors and parking lots.”

After a shock from a defibrillator, first responders were able to regain Marc’s pulse. He was rushed to the hospital and underwent a quadruple bypass four days later. He says he’s thankful for Dr. Cribbs, his coach and the first responders.

“I later found out that scar tissue from a stent I had put in led to a blockage. I was a ticking time bomb,” said Marc. “It could have happened anywhere. Thank God it happened where it did.”

Marc has since made a full recovery and is back to cycling. In fact, he’s racing in the Dallas Senior Games next week.

On Feb. 10, he was able to share his story with the audience at an award ceremony honoring Dr. Cribbs and Richard Wharton. The Richardson Fire Department gave the two civilian awards for their quick, life-saving action.

Dr. Cribbs says she’d advise everyone to learn CPR.

“It does work. It saves lives and you never know whose life might be next.”

As for Marc, he says it has been a slow process to get his fitness back to the level it was, but he’s still hoping to win the race in Utah one day.

He also hopes he can help others prevent what happened to him.

“Listen to your body. If something is not right, see your doctor.”

She had her first heart surgery at Cook Children’s when she was 11 months old. Her second came at age 15 and left her with vivid memories of the place where she would one day work.

“It was magical. I still remember the atrium, the paint on the ceiling and all of the colors. I also remember the staff. The nurses and doctors were excellent and so friendly.”

Heart surgery isn’t something one would expect to have fond memories of, but Flores says her experience as a Cook Children’s patient helped guide her life in a direction she may never have imagined.

“Growing up, I always wanted to be like my pediatric cardiologist, Dr. Lai. Now, here I am, working alongside him.”

Not only is she working with the physician who cared for her as a child, but also with her current cardiologist, Scott Pilgrim, MD, Medical Director of the Adult Congenital Heart Defect Program at Cook Children’s. Flores may be the only Cook Children’s employee able to say she’s a lifelong patient, still being treated today, but it’s a title she carries well. She knows what the patients are going through, and uses her experience to reassure them and their families.

“Sometimes I tear up because I’m thinking wow, ‘Is this what my mom was like or is this what I was like?’” said Flores. “I know surgery is scary. I’ve been through it, so I’m there, scared with them and praying with them. It can be hard but also very rewarding. “

When it comes to the future, Flores doesn’t seem too concerned about change. She says she wants to continue what she’s already doing, helping patients understand what to expect and helping parents understand what their child is going through. Most of all, she wants everyone to know that having a heart defect doesn’t need to hold a person back.

“I want patients to know that you can do anything you want to do. You can be a nurse, you can be a nurse practitioner, you can be a teacher or you can be the president!”

As for Flores, she’s perfectly happy being a nurse practitioner at Cook Children’s.

“I just want to continue working here forever. I fell in love with this place when I was a kid and am still in love with it now. “

When Ethan was born, his parents thought they had welcomed a healthy baby boy into the world. Just 24 hours later, their hearts were broken when a newborn screening revealed a serious problem.

"It was discovered that he has a congenital heart defect called Hypoplastic Left Heart Syndrome," said Jennifer Rosell, Ethan's mother.

Hypoplastic Left Heart Syndrome is a complex and rare condition in which the left side of the heart is severely underdeveloped. Doctors at Baylor Medical Center in Grapevine, Texas immediately referred Ethan to the Heart Center at Cook Children's in Fort Worth, Texas, but getting there would prove challenging. While most ambulances are equipped to care for people of all shapes and sizes, it takes special training and tools to care for the tiniest of patients. That's why the Teddy Bear Transport team at Cook Children's was called in to help. Decked out in blue jumpsuits, the Teddy Bear team carefully loaded Ethan into an ambulance packed with medical tools made specifically for babies. The team then transported Ethan nearly 30 miles to Cook Children's where he would undergo emergency heart surgery.

"It was his first time riding in a vehicle," said Jennifer.

Ethan's parents never forgot that first ride, so when his daycare recently announced they were going to hold a boxcar parade, they knew exactly what kind of car to make. 

"We wanted to go with the Teddy Bear Transport theme since it's close to our hearts," said Jennifer.

Jennifer recently posted a video of Ethan and his boxcar on Cook Children's facebook page. The Rosell's were then invited to meet the team they credit with helping save Ethan's life. 

Ethan continues to be a patient at Cook Children's. He has undergone two surgeries to repair his heart but still has one to go. That procedure is expected to be performed sometime in the next 12 months. 

Today, the Rosell's were reunited with the Teddy Bear Transport team at Cook Children's aircraft hangar in North Fort Worth. Ethan was able to climb inside one of the blue and white ambulances and he even turned on the flashing lights. Don't be surprised if one day he's an official part of the Teddy Bear team. After all, he already owns the jumpsuit.

About Teddy Bear Transport

Cook Children's is supported by one of the largest pediatric transport programs in the nation. More than 2,400 children are transported to Cook Children's Medical Center annually from Texas and its surrounding states, most for critical care. Read more here.

Kenda Hooker was 3 years old when doctors discovered a hole in the top chamber of her heart. Like many congenital heart defect (CHD) patients, she went on with her life assuming her heart had been ‘fixed.’ As memories faded, her medical records were lost and her parents, who knew the most about her condition, passed away. So when she ended up with health problems nearly three decades later, doctors didn’t know where to begin.

“I started feeling dizzy and fatigued. I even passed out a few times,” said Kenda. “Several doctors told me the same thing, ‘You’re a new mom, you’re probably depressed. I even had my husband go with me to tell them that there was something wrong.”

Kenda wasn’t depressed. Instead, she was having issues with arrhythmia and would need a catheter ablation to remove the faulty electrical pathway inside her heart. That was just the first of several unfortunate diagnosis’s Kenda would hear over the coming years.

Next, it was the severe heart defect found in her first daughter, Koralyn.

“Koralyn Marie was born April 9, 2012. We knew prenatally that she had hypoplastic left heart syndrome,” said Kenda. “She spent her whole life at Cook Children’s, we were never able to take her home.”

Koralyn’s cardiologist, Lisa Roten, M.D., said her little heart was severely underdeveloped. As hard as they tried, there was little the doctors and nurses at Cook Children’s could do to save her. She passed away at 4 months old.

With the arrival of Kenda’s second daughter, Karis, in October of 2015 came more unwelcomed news. Another heart defect was diagnosed, again prenatally, but this one was less severe.

“Karis has an atrial septal defect,” said Kenda. “She had another hole in her heart but it has already closed on its own.”

Dr. Roten says there’s no way to know right now if there’s a genetic reason Kenda’s daughters both experienced heart problems. After all, she also has three heart-healthy boys.

“Kenda is part of the first generation of complex CHD patients who are truly thriving,’ said Dr. Roten. “A lot of the surgeries we perform now were not an option before the 1980’s so we’re seeing a new group of patients who have undergone surgery and are able to lead pretty normal lives.”

Dr. Roten says there are so many of these patients that a new subspecialty has even been created. At Cook Children’s, The Adult Congenital Heart Disease program treats patients who have outgrown pediatric care, including women with CHD who are considering becoming pregnant.

For Karis, her future is full of hope. Dr. Roten isn’t sure she will even need surgery. Even if she does, it likely won’t be an open heart operation like the one her mother had. Instead, her heart could be mended in the cardiac catheterization lab at Cook Children’s, with just an overnight stay. But like her mother, she will need to see a cardiologist for lifelong care.

“The fact that people with CHDs are going on to have kids shows just how far we have come,” said Dr. Roten. “At the end of the day, it may not be the life you would have chosen for yourself or your child, but it’s not a bad life. People with CHDs are going on to live good quality lives. The most important thing is to keep going.”

About Cook Children's Heart Center
The cardiology team at Cook Children's has extensive experience in the diagnosis and treatment of pediatric heart care. They know the unique requirements of treating the growing hearts of children, including those with extremely rare and difficult conditions. Our areas of expertise include cardiac surgery,interventional cardiology, adult congenital cardiology, electrophysiology, cardiac testing and imaging,echocardiography, fetal echocardiography and cardiac anesthesiology.

The situation unfolded on Oct. 13th of last year. Now, nearly four months later, Children's Healthcare of Atlanta is using video from that game to stress the importance of life-saving training, which the hospital credits with saving Claire.

At Cook Children's Medical Center, there's an entire team devoted to making sure school nurses, teachers and staff know what to do if a student collapses. They're called Project ADAM, Automated Defibrillators in Adam’s Memory. Project ADAM helps schools implement a comprehensive plan to prevent sudden cardiac death. Part of the plan is to designate a team to write plans, conduct AED drills, and educate school staff on the warning signs and treatment of sudden cardiac death.

"We want to empower our school employees," said Laura Friend, Project ADAM Coordinator. "I always tell them 'Everyone is overqualified to do this. Anyone can save a life."

Friend spends at least three days a week traveling around the six-county region Cook Children's serves, teaching school staff how to do CPR and use an AED. From there, many nurses and athletic trainers go on to train the staff at their schools.

"A lot of people don't realize how easy it is. Every time I show a class the video of what CPR does for the brain, I hear people say 'Ohhh,'" said Friend.

The video Friend is speaking of outlines all of the steps needed to save a life in just under four minutes. It also shows how CPR keeps blood flowing to the brain, helping to prevent damage.

These steps even helped save a Keller ISD student recently.

According to the school district's website, a student at Timberview Middle School suffered a seizure and stopped breathing. Nurse Jane Danielson and the school's Code Red Team quickly sprang into action.

“I looked over afterward, noticing Mr. Morrow in a t-shirt. He had literally taken the shirt off his back to cover the student,” Danielson said. “Everyone stepped up in some way or another.”

Schools that complete the Project ADAM program are recognized as Texas Heart-Safe Schools.

For more information or AED training, please call 682-885-6755.

Thanks to a gracious act of kindness from one teenager in Arizona, a 1 year old from Joshua, Texas is no longer on that list.

Following a head injury while competing in a North Texas motocross event, Kenneth “Buddy” Wentworth III died at the age of 16 on Oct. 3, 2014. Buddy’s parents gave consent for donation. Since his death, Buddy donated his heart, lungs, liver, pancreas, kidneys, corneas and other tissue at JPS Health Network.

Eli received one of Buddy’s kidneys. Eli’s kidneys were destroyed because of massive blood loss by placental abruption, a complication of pregnancy in which the placenta separates from the uterus before birth.

Eli was one of the 134 kidney transplants that have taken place at Cook Children’s since 1993, when the organ donation program began.

The Wentworths and the Marskis met for the first time this week as part of the annual “Life Gift” flag raising ceremony that took place at Cook Children’s on April 16, 2015. The Wentworths flew from their home in Arizona especially to be there.

Darbie, Buddy’s mom, said the organ donation was Buddy’s idea.

Darbie said, “When I took Buddy to get his license, he said, ‘Mom, can I be a donor?’ My response was, ‘Dude, do you know what that means?”

It meant saving a little Eli’s life.

“Because of Buddy’s choice, we have the opportunity to raise our child and for that I will be forever grateful,”said Kammi Marski, Eli’s mom.

We have been trained to assume that chest pain is caused by the heart and an emergency, which is right in adults. But, one of the basic principles of pediatrics is that children are not “just little adults.”

Chest pain is a perfect example.

What are some common causes of chest pain in children?

1. Muscular or rib pain - This is the most common cause of chest pain in children. Pain can be caused by a bruise, muscle strain or after repetitive coughing.

2. Lungs - Asthma and pneumonia are two common lung causes of chest pain.

3. Stomach - Reflux can cause chest pain (think “heartburn”).

4. Psychological - Stress, anxiety and panic attacks frequently show up as chest pain.

If most chest pain in children is not an emergency, when does it become one?

1. The pain is severe, especially if it has the classic findings of heart pain (crushing pain, under the breastbone, moving to the left arm or up the jaw).

2. The pain is associated with difficulty breathing.

3. The pain has is associated with other symptoms (fever, nausea/vomiting for example).

What are some other findings that suggest the heart is the cause of chest pain?

1. The pain is associated with exercise or limits the child’s ability to exercise.

2. The child has lightheadedness, dizziness or faints with exercise.

3. There is a family history of heart problems or sudden death, especially if early in life.

If your child has any chest pain, a visit to your doctor is important so that they can ask you questions and perform an exam on your child to determine the cause and right treatment.

“Palpitations” is a word that we use when we become aware of the beating of our own hearts. Like many things in medicine, palpitations can be both normal and abnormal. Who of us cannot remember feeling our heart race after we have been scared or excited? This sensation is typically normal. Our bodies respond to emotional stimuli by secreting hormones and activating nerves that tell our hearts to beat faster and harder (perhaps to get ready to run away from danger).

However, palpitations are not always normal sensations. Palpitations can also be felt when we experience an “arrhythmia.” The heart’s beating is controlled by electricity. Typically, the electrical impulses start in a specific location in the top chambers of the heart (the “sinus node”) before traveling down specialized conduction pathways (like “wires”) to activate the rest of the heart. Most arrhythmias in children come from a short circuit in the wiring of the heart. Instead of the sinus node dictating how fast the heart beats, it is the characteristic of the circuit that dictates how fast the heart beats.

Palpitations occur frequently in kids. Older children and adolescents typically have no problem describing their symptoms (feeling that their heart is “racing”, or “beating out of their chests”). However, young children cannot often accurately describe what they are feeling. Some may say “my heart is beeping,” but others might indicate that their chest or heart is “hurting” or “feeling funny.” It is not uncommon for children to “feel their heart beat in their neck.” Babies, of course, cannot tell us anything about the way they are feeling. Frequently, all that we notice in babies with arrhythmias are actually signs of heart failure (which occurs after about 24-48 hours of arrhythmia), such as poor feeding, trouble breathing, lethargy or fussiness.

How can we know the difference between normal sensations and those of an arrhythmia? Here are a few tips:

1.Onset and termination: Because arrhythmias are “short circuits,” they tend to start and stop suddenly. Often patients can remember the exact moment when the sensation started and stopped. Palpitations that come from anxiety, fear, excitement, etc. tend to start and stop more gradually.

2.Heart “beating in the neck:” Many arrhythmias alter not only how fast the heart beats, but how it squeezes, making it less efficient. Instead of all of the blood traveling forwards, some may travel backwards to the blood vessels in the neck, causing this strange sensation.

3.Associated symptoms: Arrhythmias are frequently accompanied by symptoms such as chest pain, shortness of breath, and dizziness.

4.Signs of heart failure in babies: Poor feeding, trouble breathing, lethargy, or fussiness could indicate an arrhythmia in babies and should prompt parents to seek immediate medical attention.

However, even with these tips, the difference between normal sensations and those coming from arrhythmias can be difficult to tease out. The only way to know for sure is to monitor the electrical activity of the heart (using an “electrocardiogram” or “EKG”) during symptoms. There are now many types of devices that can aid diagnosis in this way, and your cardiologist may send you home with one.

The good news-arrhythmias in children are typically very treatable-either with medicines or with a procedure called an “ablation.” Either way, the goal is for the child can carry on with normal life … without a beeping heart.

Administration from Azle ISD Health Services contacted Laura Friend, Cook Children’s Project ADAM coordinator, to help guide and support the school district with implementing an automated external defibrillator (AED) emergency action plan and staff training on the use of an AED and CPR. Training was provided in 2011 to school nurses, coaches and administrators.

Just in time to save a seventh grade football player’s life. Later that year, the player was revived on the field, using the AED, after suffering a sudden cardiac arrest.

The AED proved invaluable again on March 28, 2014, when a teacher at Eagle Heights Elementary collapsed. In less than three minutes from the time the staff member collapsed, the Eagle Heights Emergency Response Team was on site administering CPR and the AED. The staff member responded to the treatment and was transported to a local hospital. Emergency room personnel and cardiac nurses commented that because of the response of Eagle Heights Emergency Response Team, a life was saved.

Cook Children’s Project ADAM provides schools in our state with training and implementing emergency action plans. Texas has a law requiring all schools to have an AED on campus. Most Texas schools have approximately 3 percent of their staff certified in CPR and AED use. 

“When schools have been trained and you have a plan in place, lives can be saved from sudden cardiac arrest," said Meagen Driskill, director of the Cook Children’s Heart Center. “The emergency plan and staff training are critical. Without a written plan and practicing how to respond to an emergency, you’ll have chaos. School-based CPR and AED programs establish a community of first responders. First responders improve the likelihood of survival for students, school staff and visitors with sudden cardiac arrest, and should be encouraged in all schools.”

1. Have you ever fainted, passed out, or had a seizure suddenly and without warning, especially during exercise?
2.  Have you ever had exercise-induced chest pain or shortness of breath?
3. Are you related to anyone with sudden, unexplained, and unexpected death before the age of 50?
4. Are you related to anyone who has been diagnosed with a sudden death-predisposing heart condition like Hypertrophic Cardiomyopathy and Long QT syndrome?

Early detection could save your child’s life. Cook Children’s will offer free EKGs during the month of February. An EKG is non-invasive and takes less than five minutes. The EKG shows how fast the heart is beating, the heart’s rhythm and the timing of the heart’s electrical signals. Any child can get one with a referral from a primary care doctor. Just ask your child’s pediatrician to order a “sports EKG.” Results are sent back to your pediatrician.

For more information, please call the Heart Center office at Cook Children’s at 682-885-2140.