5:30 a.m. – Annie wakes up, the earliest of everyone in the house. She starts chatting, singing and reading books in her “big girl bed” – a tent that goes around the mattress with special lights. “She wakes up like she’s already had two cups of coffee,” Courtney says.

6 a.m. – Annie goes to the potty. She has been potty trained for more than a year. Then she heads to the kitchen for a gluten-free and dairy-free breakfast. Annie eats very healthy food. The more consistent and predictable her day is, the happier she is.

6:30 a.m. – It is time for Annie to get dressed. She doesn’t like having her hair brushed, but she loves brushing her teeth. She compliments herself on how good her outfit looks. Her “shoe house” is what she calls the shoes by the back door, and she picks out a pair before getting her backpack.

7:30 a.m. – Courtney takes Annie to the cardiologist – the longest appointment. Annie gets very upset about anything medical-related, so Courtney and Spencer, Annie’s father, let her know the day before appointments. Courtney also takes Averie, a TCU premed student, to appointments. She serves as their personal child life specialist; while Courtney fills out paperwork and has serious conversations with the doctor, Averie helps Annie.

7:50 a.m. – As Courtney pulls into the parking garage, Annie starts getting fussy and anxious. “Copy mama,” Courtney says. “I am brave. I am safe. I will be with my mama. I will be with Miss Averie. My doctor is my helper.” Annie repeats everything Courtney says, and it calms her down.

7:55 a.m. – Courtney, Averie and Annie walk into the doctor's office. Courtney brings a medical calming kit she created – a special bag filled with music, books, pictures and interactive educational toys. Annie is now able to participate in the appointment and feels empowered.  

8 a.m. – Annie’s name is called, and a tech walks them to a room to check her vitals. “With kids, it is important to gain trust and rapport with the tech, especially for Annie since she has a lot of medical anxiety, and we have worked hard to get through it,” Courtney says. Courtney asks Annie to say her name to the tech, then Courtney spells the tech’s name for Annie. They play a game with weight and height checks as Courtney asks, “How big and tall do you think mommy is?” Annie does great and they celebrate with her.

8:15 a.m. – Back in the room, Annie gets upset again, and Averie pulls out the calming kit so Courtney can go to the restroom. The nurse enters and introduces herself to Annie before prepping her for an EKG, which she had not had in a year. Knowing the number of leads and wires can be a problem, Courtney places a sticker on herself and says, “See? Easy peasy!” It is a struggle, but Annie gets through the procedure as she counts the stickers in French. They celebrate again after the EKG.

9 a.m. – Now it’s time for the echocardiogram – the hardest part because it is in another room. This is an important test to see Annie’s heart at baseline and to check for pulmonary hypertension. With an echocardiogram, the patient must remain still and calm so the technician can capture all the angles and ensure the heart rate and blood pressure don’t’ affect the results. 

Annie sees the table with paper on it and thinks it means she is getting a blood draw. “Up to this point, she hasn’t had any screen time,” Courtney says. “We save it for this moment – like the Hail Mary.” Courtney lies on her back next to Annie, and they snuggle. They sing songs from “Frozen” together, and the nurse laughs as Annie quotes the entire movie. “It’s so fun to watch Annie break people’s expectations of her,” Courtney says.

9:30 a.m. – Robert Loar, M.D., Annie’s cardiologist, enters the room. Annie was one of Dr. Loar’s first patients; Courtney began seeing him while she was pregnant. Dr. Loar is a TCU horned frog, too, and they discuss life before diving into medical updates. “He genuinely cares for Annie,” Courtney says.

Dr. Loar says Annie’s pacemaker has eight years of battery life left. He and Courtney then discuss heart pressures and anatomy; he says her repair is holding up beautifully and is exactly what he wants to see. 

“Annie’s story is so extreme and miraculous,” Courtney says. “Annie’s journey is still being used for good to help treat other children and give parents hope.”
Annie says, “Dr. Loar, I love you,” and he responds, “Annie, I love you too.”

Courtney packs the toys and celebrates with Annie again. Annie says, “We did it. I was brave. I was safe and we saw the doctor.” This is a big moment for Courtney, who has been helping Annie process emotions as a successful coping skill.

10 a.m. – Courtney takes Annie to KinderFrogs, a school program designed to prepare children with Down syndrome for kindergarten. Annie walks herself into the classroom, hangs up her backpack and sits in her chair. “Annie loves everything about school so much and has never missed a day – just leaves for doctor’s appointments here and there,” Courtney says.

2:45 p.m. – Courtney and Russ, Annie’s baby brother, pick up Annie from school.

3:15 p.m. – Courtney, Russ and Annie pick up Wells, Annie’s older brother, from school.

3:30 p.m. – Annie plays at home. Courtney is intentional with screen time, so they try to avoid TV and use it only as a last resort. They play outside, in the playroom or in their bedroom. Annie does a great job playing by herself or with her brothers as she becomes more independent.

6 p.m. – Dinnertime! Annie’s diet is clean and nutritious, which Courtney says provides tremendous health benefits.

7 p.m. – It’s Friday night, which means games with the family. They have found games Annie enjoys playing with them. “It is so fun to push her to do more, include her and see what she can do,” Courtney says.

7:45 p.m. – Annie chooses her pajamas. “No mommy I do it,” she says.

8 p.m. – Spencer lies with Annie until she falls asleep.

“There is no doubt the 3D print of Ivy’s heart that surgeons used to plan and prepare for her procedure contributed to the positive outcome and long-term success of the surgical repair,” said Steve Muyskens, M.D., cardiologist and medical director of cardiac MRI and the 3D Lab at Cook Children’s Medical Center–Fort Worth. “Three-dimensional printing takes away the guesswork for physicians, allowing them to completely visualize a patient’s anatomy and unique anomalies and map their intervention before they get to the operating room.”

Ivy, now 10, was born with congenitally corrected transposition of the great arteries (ccTGA) in which the two lower pumping chambers, or ventricles, of her heart are reversed. In a normal heart, the right atrium sends unoxygenated blood through the right ventricle, which pumps it through the pulmonary artery into the lungs. The blood is then oxygenated and flows back into the left atrium. From there, the left ventricle pumps the blood into the aorta where it is carried throughout the body.

In Ivy’s heart, however, the ventricles were switched. This meant the normally weaker and thinner-walled right ventricle was doing the high-pressure job of pumping blood throughout the body via the aorta—a function best suited for the thicker, stronger left ventricle. This inefficient pumping function put her at high risk for heart failure, irregular heart rhythms and sudden cardiac death. Ivy’s heart was further complicated by having a hole in the bottom chamber and a very small pulmonary valve, causing limited blood flow to her lungs. Ivy’s heart defects were unable to be repaired in infancy, so she had a palliative procedure at 2 weeks old to stabilize her condition while she grew.

Then, at 19 months old, Ivy became a candidate for the Nikaidoh procedure, also known as an aortic translocation. The procedure is named after Hisashi Nikaidoh, M.D., a retired Cook Children’s cardiovascular surgeon and innovator. Dr. Nikaidoh developed the complex open-heart surgery that reverses the translocation and reconstructs a more normal ventricular and arterial layout. He assisted Vincent Tam, M.D., during the surgery. Dr. Tam is a pediatric cardiothoracic surgeon and Cook Children’s medical director of Cardiothoracic Surgery.

To prepare for the procedure and to explain the complex surgery to Ivy’s family, Dr. Tam used a 3D printing of Ivy’s heart that was created in Cook Children’s 3D Lab. The printed heart allowed Dr. Tam to visualize Ivy’s exact anatomy so that he knew what to expect going into surgery.

It also helped Ivy’s family understand her complicated diagnosis and Dr. Tam’s plan to save her life.

“I've noticed over time that having these 3D models helps parents and other care providers, like nurses, better connect with the plan of care,” Dr. Muyskens said. “If you think about it from a parent standpoint, you're trusting this person, a surgeon or even just a cardiologist like myself, to take your child on a journey that's going to make them as happy and healthy as possible, oftentimes with no understanding of this very complex issue. So if you're able to then bridge that gap and have the surgeon show a parent an actual 3D model they can hold in their hands and say, ‘Here's your child's heart. This is why it's so complex. This is why it's different. There’s not a template for this, but this is what we think we can do. Let's walk through this together and figure out how we want to care for your child as a medical team and a family.’ I think that really helps connect those two pieces when you have a really unusual case.”

It certainly did for Ivy’s mom, Elizabeth. She says the physical model of Ivy’s heart helped her understand her baby’s complicated condition and Dr. Tam’s surgical plan. Having that knowledge was empowering and compelled her to hold on to hope during her daughter’s day-long surgery.

Surgical Solutions

In addition to his work in the 3D Lab, Dr. Muyskens is a cardiologist with a full patient load. He often partners with cardiothoracic surgeons to repair congenital heart defects and cardiovascular anomalies in his patients. When 2D imaging was the only resource for visualizing and understanding a patient’s anatomy, it wasn’t uncommon for Dr. Muyskens to hear surgeons say, “We’ll have to see for sure when we get in there,” when discussing a surgical intervention. This element of the unknown sparked a vision to create the 3D Lab to give physicians a deeper, more detailed look into the problems they were working to solve.

“I always felt like we need to be doing more and wondered how I can further the offering we have to help surgeons prepare for complex surgeries,” he said. “Your heart is about the size of your fist. So if you think about the size of a baby’s heart, and then trying to do open-heart surgery and move coronaries and great vessels and create new pathways for blood flow, it's a very complex surgery. By 3D printing the heart, we can have a much better understanding of those relationships prior to surgery. That's how we got started. Now we have three printers, surface scanners and virtual and augmented reality options. We've expanded in a lot of ways.’

While the 3D Lab originated with cardiology, its tools and resources are now available to multiple specialties. In the 10 years since the Lab’s debut with Ivy’s surgery, specialties such as plastic surgery, craniofacial surgery and orthopedics now utilize its capabilities to create precise, unique copies of spines, facial features, bone structures and more. These models can be printed in multiple colors and materials that are engineered to be more tissue-like, whether that’s bone or soft tissues. This creates a more realistic feel for a surgeon who wants to practice drilling into bone or cutting into tissue prior to a surgery. 

Practice Makes Perfect

The 3D Lab has expanded its pre-operative practice options, too.

“We're still doing the printing that we have done, but we've also moved a lot more into virtual surgical and interventional planning,” Dr. Muyskens said. “For complicated cases, we want to have a pre-operative or interventional plan in place so we know, for example in the catheterization lab, the exact camera angles we need and what size stents we should use. Now we can virtually place stents during simulation and review our work. Sometimes we go down the pathway virtually and we realize that it's probably not a great case for the cath lab because it’s actually much trickier than the images would've suggested. So we will then send those patients to surgery. That's kind of been our current frontier.”

Much like a pilot in a flight simulator, virtual reality allows surgeons to see internal structures, plan their approach and practice their cuts in the Lab rather than saving these critical and time-consuming decisions for the OR when the patient is under anesthesia and the surgical site is open. This tangible experience outside of the OR builds valuable knowledge and spatial awareness of a patient’s unique anatomy, increases surgical accuracy, removes the element of surprise and decreases time under anesthesia—all precursors to improved outcomes for patients. 

Mirror Image Models

The addition of a 4B printer allows the Lab to produce biocompatible materials that can be used temporarily in the sterile surgical field, like custom cutting guides or molds used to repair facial fractures.

Take a cheekbone fracture, for example. Classically, a surgeon would shape a piece of mesh to look similar to the other side, place the mesh inside the cheek area and attach the broken bones to the mesh so that they heal in approximately the same shape as the other side. 

“Now we can take scans of the healthy side, mirror the image and print a 3D model,” Dr. Muyskens said. “Surgeons can then take that into the OR and prebend plates and mesh around the printed model to create the ideal version of the fractured side. Not only does it save time, but it allows the surgeon to create a repair that looks exactly like the healthy side.”

The 3D Lab’s use of surface scanners also contributes to improved aesthetic outcomes. By scanning an already 3D object, like an ear, the Lab can produce exact replicas that a surgeon can use to repair malformations.

Leveraging these tools to plan ahead and remove as much of the guesswork as possible leads to fewer complications and improved outcomes. It also translates to lower health care costs for patients and the health care system as a whole, according to Dr. Muyskens.

“We were pretty early adapters of this technology,” Dr. Muyskens said. “So I think it says a lot about Cook Children’s and our desire to provide innovative care and solve complex problems using state-of-the-art methods.”

10 Years and Counting

Today, Ivy is full of life. Thanks to good surgical planning made possible with the 3D Lab, expert execution by Dr. Tam and Dr. Nikaidoh, and ongoing care from Cook Children’s cardiologist Lisa Roten, M.D., Ivy’s heart is still going strong. She loves to skate, play with her dog and have fun.

“Her personality is so big,” Elizabeth said. “She acts like nothing happened to her. She acts like she's not even sick, and like she doesn't have a pacemaker. She does what she wants to do. She's like a little energizer bunny. Nonstop. She just keeps going.”

She and her husband, Zach Beavers, spoke with numerous hospitals, but none would take them. Most places were either not willing or not equipped to handle the heart defect that had been detected in their unborn daughter.

While still in the womb, Anna Claire was diagnosed with a rare heart condition in which the left side of the heart is too small to pump blood. To make things more complicated, she also had a genetic condition that stilted her growth. Two months before Anna Claire’s due date in April, the Beavers’ found out their home hospital in Georgia was not willing to operate on her due to the high risks.

With less than a month to go, the Beavers found a ray of hope when their doctor heard about a hospital in Texas that had unusually positive results treating Anna Claire’s condition. There seemed to be one place that would help them: Cook Children’s Medical Center – Fort Worth. 

One of the first things Cardiologist Kevin Wilkes, M.D. learned about Cook Children’s was that the hospital doesn’t shy away from taking care of the most medically complex children. As a pediatric and fetal cardiologist, Wilkes also quickly learned—and is part of the reason—that Cook Children’s excels at treating those children.

In 2024, Dr. Wilkes noticed one area in particular where Cook Children’s seemed to achieve better patient outcomes than other hospitals: a rare but life-threatening combination of Hypoplastic Left Heart Syndrome (HLHS) and Turner Syndrome. In HLHS, the left side of the heart does not develop properly and cannot pump blood to the body. In Turner Syndrome, the X chromosome is missing or partially missing. In very rare cases, babies -- like Anna Claire -- can have both.

Through the Pediatric Research Program, a partnership between UNT Health Fort Worth and Cook Children’s, third-year medical student Anisha Saripalli started to look into the numbers. Over the summer of 2024, she, along with Research Scientists Chris Tsao and Fadeke Ogunyankin, dug through electronic case records in Cook Children’s basement. The results were compelling.

Compared to other hospitals, Cook Children’s outcomes for babies with Turner Syndrome and HLHS are some of the best in the nation, far exceeding the mortality rate of other centers. On average, between 80 and 90% of babies with both conditions die across the country after their first surgery. In fact, the prognosis at many hospitals is so poor for those patients that many places won’t even attempt to perform surgery on a baby with both conditions. However, at Cook Children’s, 100% of babies survived their first surgery.

“That's pretty solid to recommend that these patients go through the surgery, because we're increasing their chance of having a good life. And we're not just saying, ‘oh, well, you're incurable, untreatable,’” Saripalli said.

In short, Cook Children’s gives these babies a chance.

And hundreds of miles away, one family was asking for just that.

In February 2025, the same month that Saripalli’s research was presented at a cardiology conference, the Beavers found out that Anna Claire had both HLHS and Turner Syndrome.

Their birth plans suddenly vanished; the Atlanta hospital where Sarah Ellen planned to deliver said it did not have the ability to treat Anna Claire’s condition.

Because the left side of Anna Claire’s heart could not pump blood, the right side of her heart would need to become the pumping chamber for the rest of the body. But few hospitals are able or willing to perform the surgery on babies with Turner Syndrome due to the added complications.

Anna Claire would need three heart surgeries, the first of which -- called the Norwood surgery – would have to be done within three days of her birth. The Beavers contacted several major heart centers, but they all said they could not take Anna Claire.

“We were just hoping someone would say yes. Because statistics really were not super favorable, and so we were really prepared for the worst,” Sarah Ellen said. “But we were just hoping for a chance.”

At the end of February, Dr. Wilkes presented Saripalli’s research at a Cardiology Conference in Florida. She and the research team found that between 2013 and 2024, Cook Children’s saw six babies with HLHS and Turner Syndrome. In contrast to the high mortality at other hospitals, at Cook Children’s, five of the babies (83%) are alive. 

Coincidentally, the Beavers’ cardiologist happened to attend the presentation. He immediately thought of his patients back in Georgia.

“On Friday afternoon, our home cardiologist called us and was like, ‘hey, there's someone with really good statistics,” Sarah Ellen said. “And that probably got us through the weekend, because we already had gotten two ‘nos’ from hospitals. And we were like, ‘What are we gonna do?’ We don't have time.”

That Monday, the Beavers scheduled a phone call with Dr. Wilkes and Vincent Tam, M.D., the Medical Director of Cook Children's Cardiothoracic Surgery. Dr. Tam walked them through the procedures he would perform on Anna Claire. While other hospitals would not consider taking on Anna Claire’s condition, Dr. Tam seemed undaunted.

“(Tam) never balked at any of it,” Zach said. “He never thought that it was a challenge or any concern, and just made it seem like he's just gonna do the same thing that he always does, and it was gonna be great.”

The Beavers packed the biggest suitcases they had and, leaving behind their home hospital and friends and family, headed to Texas.

On March 25, the Beavers stepped into Cook Children’s for the first time.

“We walked the halls receiving a quick tour and then we had the opportunity to meet with Dr. Tam, Anna Claire’s surgeon,” Sarah Ellen wrote that day on the family’s CaringBridge blog, which provided updates on Anna Claire. “After over an hour with him, we were more at peace believing that the Lord intended for us to be here all along.”

Leading up to Anna Claire’s birth -- and her open-heart surgery – Dr. Tam, Dr. Wilkes and other Cook Children’s staff did everything they could to make the Beavers comfortable and confident. Dr. Tam explained the surgery to them again and it was clear to the Beavers that he had studied and perfected the procedure.

But there was still a risk. Saripalli said there is not much research on babies with both HLHS and Turner Syndrome because the condition is so rare.

But Dr. Tam and Dr. Wilkes were confident. Cook Children’s has such good outcomes, they said, because of the infrastructure and support built into every layer of the medical center.

“I've been here at Cook Children’s for more than 20 years, and we have gradually built a team to the point where we really have excellent people working in all of the teams involved,” Dr. Tam said. “Including nursing staff, respiratory therapy, the technicians that do the ultrasound for the Echo, all of our cardiologists, the ICU doctors, the anesthesiologist doctors, the nurses that help with anesthesia. And my whole operating room team. I mean it's a huge team effort.”

On April 3, that medical team assembled to welcome Anna Claire to the world.

Anna Claire was born right on time, at 4:56 a.m. on her due date at a nearby hospital before being transferred to Cook Children’s and Dr. Tam knew he had to move quickly so that the right side of her heart didn’t overwork itself. The next day, Anna Claire had her first open-heart surgery.

The group effort paid off; Anna Claire’s first surgery was a success. The team successfully began the process of reworking the right ventricle to support the rest of her circulation.

The following week brought another scary moment when blood and fluid started to build up around Anna Claire’s tiny heart and the medical team determined they needed to open her back up. Fortunately, Dr. Tam and the team found the source of the bleeding and stopped it immediately.

The next weeks brought other challenges and still more members onto Anna Claire’s medical team. Her feeding, oxygen levels, sleep patterns and every internal system were constantly monitored. The next five weeks, Zach said, felt like months.

“Yeah, there were days it was just… you kind of went to bed like, ‘man, this was a lot,’ and you woke up knowing ‘we're doing it again today,’” Sarah Ellen said.

But they also found support at Cook Children’s.

“In these days, this place has held us,” Sarah Ellen wrote at the time on her blog. “Strangers have become best friends and family. Nurses and doctors have become dear friends. Staff members have learned our family’s story. The doors we walked in on March 25 have become a place we will forever call home.”

Anna Claire was able to temporarily leave the hospital on May 30 and stay at the Beavers’ temporary home that a local DFW family offered them. On July 24, she had her second open- heart surgery. While anxiety-inducing for the Beavers, the surgery went well, and Anna Claire made the monumental milestone of moving from the ICU to the less intensive Cardiac Step Down Unit.

Exactly five months after the Beavers arrived -- unsure of how long they would be away from home and uncertain about their daughter’s future -- the family of three left Fort Worth to head back home to Georgia.

Leaving was emotional for many reasons. They were excited to return to their home, family and, most importantly, their Georgia Bulldogs (Anna Claire had a jersey waiting for her at home). But they had to say goodbye to the dozens of people at Cook Children’s who made one of the most challenging times of their lives into something bearable. On Aug. 8, they visited the Cardiology Unit with Anna Claire, who wore a jumper adorned with blue flowers and a white bow. The staff excitedly gathered around her, commenting on how strong she looked and how well she drank from her bottle.

Two of Anna Claire’s nurses with the Home Monitoring Unit, Emma Hughes and Mariah Trammel, marveled at how she had exceeded everyone’s expectations.

“Just in general, having her heart diagnosis is really challenging and she has a genetic component on top of that, which adds to the complexity,” Mariah Trammel, Heart Center Discharge Coordinator, Cardiology-Administration, said. “So we were one of the only institutions that were willing to take her on and do her surgery. And she has done incredibly well.”

Before leaving Fort Worth, they also met Saripalli for the first time. For Saripalli, meeting the family brought home the fact that her research, and the decades of work it's based on, has real, life-saving implications. Saripalli’s project highlighted how Cook Children’s has created a collaboration between research and clinical medicine that leads to immediate impact. Medical research can take years to trickle down to actual patients. Cook Children’s partnerships with universities like UNT Health Fort Worth means solutions can be rapidly translated to real results.

Saripalli, Dr. Tam and Dr. Wilkes hope the Beavers’ story and Saripalli’s research provide a similar ray of hope for others.

“This research at Cook Children's was a game changer,” Dr. Wilkes said. “And I think you see that in how quickly it affected the family. By getting that information out there nationally at a conference within a week, we were able to change the outcome of a family. I hope in the future we can change the outcome of many more families undergoing this type of heart surgery.”

Anna Claire is now seven months old and continues to thrive in Georgia.

Just a few years earlier, orphan trains rumbled through Texas towns, carrying vulnerable children westward seeking new homes and opportunities. In Fort Worth, amidst the challenges of a growing frontier town, individuals and families opened their hearts and homes to these children. Some specifically chose to take in the sickest among them, the ones with special needs, or those whom others might have overlooked. It was a poignant time in the nation’s history, but that legacy of compassion would soon inspire a new kind of home for vulnerable children—a place devoted to healing and to a Promise to improve the health and well-being of all children in its care and communities.

A lot has changed in a century. Orphan trains are a thing of the past, replaced with child welfare services that aim to keep children safe and families together if possible. Camp Bowie is now a boulevard bridging history and commerce; the Stockyards are an entertainment hotspot showcasing cowboy culture; and Fort Worth’s population is nearing 1 million, making it the 12th largest city in the country.

But one thing remains the same. The spirit of embracing the vulnerable and offering hope to those most in need still runs deep in the heart of this community. Through all of Cowtown’s transformations, Cook Children’s has risen to meet the needs of the moment—expanding its campus, evolving its technological capabilities, and adding services to improve the health and well-being of all children in its care.

Today, Cook Children’s begins a new chapter in its 107-year history of hope and healing by breaking ground on the site that will soon see the rise of a new 760,000-square-foot patient care tower, currently referred to as the West Tower.

“About 59 people move to this area every day,” said Stan Davis, president of Cook Children’s Medical Center – Fort Worth. “To keep pace with this unprecedented growth, we must also expand. This isn't just about getting bigger. It's about ensuring we can continue to be that steadfast home for every child who needs us. It's about equipping our exceptional doctors and nurses with the leading-edge tools they need, providing a comforting space for our tiniest patients, and offering a sanctuary for our sickest children.”

Expanding the Blue Peaks
The addition of the West Tower will enhance Cook Children’s Heart Center, already home to the nation’s top pediatric cardiologists and cardiovascular surgeons. The growth, which includes two new dedicated cardiovascular operating rooms, paves the way for Cook Children’s surgeons to perform life-saving heart transplants.

The West Tower also makes way for the expansion and redesign of Cook Children’s Pediatric Intensive Care Unit (PICU). Designs for the new PICU focus on two key elements for supporting healing and improving the patient and family experience—sunlight and privacy.

Over the past decade, studies have shown that a lack of natural light and loud environment can increase the risk for what doctors call ICU delirium, according to Kyle Brown, M.D., PICU co-medical director. It is a common occurrence in intensive care settings, especially those like Cook Children’s current 20-year-old PICU where there are few private rooms and natural light is hard to find.

“Some kids that come into the ICU after a serious injury are thinking clearly and know 100% where they are and who their family is. Mentally, they are their usual selves,” said Linda Thompson, M.D., co-medical director of Cook Children’s PICU. “Then, with a few days of not sleeping well, with pain medicine on top of that, and being stuck in bed, they can start to get confused. They don’t recognize people as well and they can start to see things that aren’t there. This is considered ICU delirium.”

One Patient’s Experience
For former PICU patient Emerson Bellucci, it only took 24 hours for the delirium to set in.

In 2024, Emerson spent 36 days in Cook Children’s PICU following a rare and life-threatening allergic reaction to the common antibiotic Bactrim. The reaction damaged her lungs so severely she required life-support via extracorporeal membrane oxygenation, or ECMO. It is the most advanced form of life support available. Essentially, an external artificial lung. A pioneer in her own right, Emerson was one of very few patients to remain awake and even walk around while on ECMO. Most are fully sedated during this life-supporting treatment.

In the initial days of Emerson’s PICU stay, she and her family shared space with 42 others healing from severe and traumatic injuries and illnesses. In her case, Emerson was separated from neighboring patients only by a curtain. The sights and sounds of every other patient’s monitors, machines, televisions, and even the cries of an infant patient, often interrupted her sleep and added to her own anxiety about her illness. The lack of natural light caused her to confuse her days and nights.

“There were no windows to notice it was night and we were supposed to be sleeping,” said Ashlee Bellucci, Emerson’s mom. “I think that was the beginning of her delirium that really set her pattern to where she was up a lot at night. As a mom, you’re up with her, too. So it was hard.” 

Despite the best efforts of Cook Children’s PICU staff to institute daytime quiet hours for napping, simulate nighttime hours with low light settings, and minimize disruption while caring for a neighboring patient, the scenario described by Dr. Thompson and experienced by Emerson happens over and over again.

“When we have increased delirium, that increases the length of time that patients spend in the ICU and the length of time that they spend in the hospital,” Dr. Brown said. “It also leads to what we now call post-intensive care syndrome, which is something that both patients and families can experience after they leave the ICU. This includes things like PTSD and anxiety.”

Once Emerson was placed on ECMO, she was moved to a more private, enclosed space in the current PICU. While it had a small window that helped regulate her sleep, it did not have a private bathroom. Emerson’s parents still had to trek to the family waiting area for showers and restroom breaks.

“Having to walk down the halls in my pajamas to the bathroom was very inconvenient,” Ashlee said. “But I think one of the hardest things was shower time. Her dad and I had to plan showers around when doctors would be visiting so that we could be sure one of us was there. I felt like a college kid in a dorm taking all my things, and having to go down and sometimes wait for a shower. Inevitably, you would forget something.”

The design of the new PICU aims to change that.

“Instead of making families feel like they're coming into our place, we need a way to make it feel more like home for them and more like we're actually entering their space,” Dr. Brown said. “That's really what creates a more healing environment for the patient and family,” Dr. Brown said.

Hope Lights the Way
In the redesigned PICU, every patient will have a fully enclosed private room with a window, as well as a private bathroom. A sliding glass door with a curtain for privacy will shield patients from the sights and sounds of their neighbors’ care and machines, while allowing the medical team to keep a close eye on their patients. Quiet sleep will go uninterrupted by the commotion of a middle-of-the-night admission of a new neighboring patient. Parents and young patients can focus on their own healing without the added trauma of witnessing the circumstances of others. When the sun rises, patient rooms will be drenched with natural light, awakening their souls to the hope of a new day.

“I think the first time I noticed the little window it just reminded me of outside and that I won't be stuck here forever,” Emerson said about the more private ICU space she was moved to while on ECMO. “Having a window definitely increased your mood. Having sunlight is just like a happy thing.”

New Frontiers
The West Tower will be a place where Cook Children’s charts new frontiers in medical research, ensuring that every step forward in patient care is informed by the rigorous pursuit of knowledge. While Cook Children’s already has 300 open clinical trials, as well as 500 ongoing studies, the expansion of services like Cardiology and Pediatric Intensive Care opens new doors for even more research that advances medicine and shapes the quality of care.

Take cancer treatment, for example. Over the past 50 years, research-driven protocols have decreased the five-year mortality for Acute Lymphoblastic Leukemia—the most common pediatric cancer— from 80% to 5%, according to a 2021 article published in the Journal of Clinical Medicine.

“The centers that do research have higher, better quality numbers than the centers that don’t," said William Stigall, M.D., Cook Children’s chief research officer. “Research is one of those things that make you better at everything, and the robust space and technological capacity of the new tower will give us the capacity to do even more.”

Design Through the Eyes of Others
Planning and design of the West Tower is a collaborative effort between staff, patients and the design and construction teams.

“We have thought long and hard about what is important to us and our patients,” said Melodie Davis, DNP, RN, CENP, Director of PICU, ECMO and Dialysis at Cook Children’s. “For several months we have gathered input from our team and our patients. Bringing together evidence from literature on how PICUs can create healing environments with our lived experiences and collaborating with the construction team is truly a dream come true. Our patients, their families, and our staff have so much to look forward to.”

Today, Emerson and her family joined Cook Children’s executives, members of the board of directors, city officials and community supporters to turn the first shovels of dirt on the site of the future West Tower. Construction is expected to take five years.

“This groundbreaking of the West Tower is not just the laying of concrete and steel. It is a powerful continuation of the pioneering spirit,” said Rick Merrill, president and CEO of Cook Children’s Health Care System. “It is a tangible manifestation of our enduring commitment to the future, a bold step driven by the same courage and vision that defined Fort Worth from its earliest days.”

Fast Facts

• The West Tower will seamlessly integrate with the existing medical center floor by floor.
• The services/units moving to the West Tower will make way for the expansion of Hematology/Oncology as well as the Neonatal Intensive Care Unit, which will grow from 106 beds to 143.
• The Heart Center will gain two new operating rooms, a third cardiac catheterization laboratory for advanced diagnostics and interventions, 14 additional cardiovascular intensive care beds, as well as a new Step-down Unit for transitioning care as heart patients heal. All Heart Center inpatient services will be conveniently located on one floor in the new tower, from procedure prep spaces, to operating rooms and special procedure areas, to the Cardiovascular ICU and Step-down Unit.
• In addition to the Cardiovascular Operating Rooms, the West Tower will house eight new operating rooms. Two will be specifically equipped for Orthopedic surgery and two for Neurosurgery.
• The redesigned PICU will feature 56 private patient rooms with private bathrooms.
• Anticipating future growth, shell space will be included in the build.

Twenty-six minutes and 29 seconds: that is how long 15-year-old Grant Ketzle was without a heartbeat and the moment that his mother walked into the room at Cook Children’s Emergency Department – Prosper. Tiffany Ketzle saw her son lying on the treatment table, receiving chest compressions. As a nurse practitioner, she knew the magnitude of what those minutes meant and she recognized the level of care given to her son in one of the hardest moments of her life.

“Is my son alive?” It was a question she asked, but was hard to answer as the medical team performed CPR. Within minutes, the care team restored his heartbeat, however, it took more than four hours for Grant’s vitals to be stable enough to be flown via a Teddy Bear Transport helicopter to Cook Children’s Medical Center – Fort Worth.

It started that morning of Sept. 2, 2024, Labor Day weekend, when Grant was at football practice at Walnut Grove High School and he felt something wasn’t right. There were multiple times when he felt like he was going to pass out. He told an athletic trainer who was concerned and called his mother, Tiffany. 

Tiffany called her mother (Grant’s grandmother) who picked him up from practice and Tiffany gave her directions to Cook Children’s Emergency Department – Prosper. Grant felt like he was going to pass out and throw up during the car ride, but they made it. He passed out shortly after arriving and sitting in a wheelchair. 

Soon, Tiffany’s mother called her screaming and crying, telling Tiffany that Grant was coding. Tiffany, who was at work, grabbed her purse and keys as fast as she could, and a coworker drove her to the medical center.

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Grant Ketzle’s life was saved thanks to the quick actions of his family and the team at Cook Children’s Emergency Department - Prosper when he had a cardiac arrest.

“I just remember walking into the room where Grant was and the code clock said 26:29, which is an awfully long time to be coding,” Tiffany said. “He looked very pale, he did not look alive.”

Julio Castillo, M.D., Medical Director of Cook Children’s Emergency Department Prosper, debriefed with her and told her that when Grant arrived, his heart had stopped completely and he was in respiratory failure.

“What I just kept thinking is, No. 1, my child's not going to die today. This is not happening. And No. 2, I've been in his position as a nurse practitioner where I'm trying to tell a parent very terrible information,” Tiffany said. “And I just remember thinking he had such a grace about him and the things he had to tell me were awful, awful things. But he said it in such a kind and caring way.”

Grant had experienced blood clots in his lungs, strokes and acute respiratory distress syndrome (ARDS) which prevents the lungs from exchanging oxygen and carbon dioxide effectively. He was diagnosed with an incidental heart rhythm condition called Wolff-Parkinson-White Syndrome, which is an abnormal extra electrical pathway in his heart that he was born with.

Tiffany was not surprised to see so many people in Grant’s room, but what moved her was the compassion she received from the team members.

“That's what struck me the most about the ER is every single person in that room, you could tell they cared about my son. They were trying to do everything they could to keep him alive,” Tiffany said. “They were all very, very compassionate. From the nurses to all the doctors to the flight crew, every single person, including the security guard.”

Dr. Castillo said this was truly a team effort.

"This was a testament to the incredible skill and dedication of the team. From the moment Grant arrived, the response was swift and decisive,” Dr. Castillo said. “Every member of our team who was at the emergency department that day made a difference in this child’s life, whether they were clinical or non-clinical. To see this young man recover and return to his life is a profound reminder of the power of human resilience and the life-saving work we get to be a part of."

Tiffany shared a post about Grant’s experience on Facebook to share what they had gone through and to help raise awareness of the Cook Children’s Medical Center and Emergency Department in Prosper.

“I was very grateful for the care that we received there. Everyone there was top notch. We definitely wanted to get the word out that this resource of Cook Children’s is here,” Tiffany said. “If this had happened to my son two years ago, he would not be here. If this campus didn’t exist, he wouldn’t be here.”

“We're just very grateful that this campus is directly tied into Fort Worth. So within a 20-minute helicopter ride, you can get every resource that you need,” Tiffany said.

Recovery at Cook Children’s Medical Center – Fort Worth

When Grant arrived at the Pediatric Intensive Care Unit (PICU) of Fort Worth, Tiffany commended the communication and care from all the staff members. She said she truly felt like they were all one unit and was grateful for the involvement in his care.

“The first day was probably the worst day of our lives and as a parent, your worst fear is that your child is going to die,” Tiffany said. “It was such a horrible time in our lives... but somehow the staff just make it a little better, just to give some hope or grace. We got that every single day there.”

One of the great things about Cook Children’s is having easy access to a high level of care and specialists, Tiffany said. Within the first few hours of Grant arriving at Fort Worth, he was seen by many specialists, including gastroenterology, cardiology and pulmonology. Eventually, they also had appointments with hematology/oncology, nephrology and neurology. They were grateful that the specialties are also available in Prosper.

“They were able to coordinate a lot of the testing,” Tiffany said. “For example, he has an MRI coming up for his brain, he's got an ultrasound coming up and prior to this, we would have to go to Fort Worth to do those things. Well, now they can do those things here in Prosper.”

In the PICU, Grant was paralyzed because his respiratory condition was poor and he had a breathing tube placed. When Grant started to wake up after a day and a half, he made a heart shape with his two hands and pointed at the nurses. Even though he was unconscious while they spoke to him, he recognized their voices when he woke up.

As one nurse offered to wash his hair, Tiffany was impressed that she had all the tools and comfort items to wash his hair while he was in the ICU. Mom noticed that looking at his vitals, he became more relaxed as his hair was washed.

“It was wonderful to see people care for your child like you feel like they would care for their own,” Tiffany said. “That’s truly what it felt like.”

Grant was released from the medical center in Fort Worth on Sept. 11, and to the family’s surprise, Grant had recovered well enough to make it to homecoming at his school. Grant said this medical journey has brought him closer to his faith and that he hopes to use his story to encourage others to never give up.

“It was crazy to think how God works because I progressed so much in 10 days and on the final day I felt so much joy when I heard the words that we could go home,” Grant said. “What makes this place so special and unique is how kind and caring the staff are. They were amazing and they knew what to do. I trusted in God and all of them.”

Second Heart Incident

In late October, Grant went to the Cook Children’s Emergency Department - Prosper a second time when his heart caused him discomfort when he woke up in the middle of the night. He felt like his heartbeat was abnormal again.

The family rushed to the emergency department and his care team discovered that his heart was in a rare and dangerous arrhythmia called preexcited atrial fibrillation, which is associated with his Wolff-Parkinson-White syndrome. Through a telehealth visit at the emergency department, a Cook Children’s cardiologist in Fort Worth was able to identify his rare type of arrhythmia and the team at the emergency department in Prosper shocked his heart back into a normal rhythm.

He was flown to Cook Children’s Medical Center – Fort Worth where electrophysiology cardiologist Rohit Madani, M.D. cared for him. Dr. Madani performed an electrophysiology study in which he ablated the abnormal electrical pathway in his heart with a specialized catheter that burns heart tissue. Grant has recovered well from this procedure and Dr. Madani’s hope is that this will be a long-term cure for Grant’s arrhythmia.

“Grant at this point has the same risk of a heart event happening in the future as anybody else,” Tiffany said. “We’re very grateful.”

Dr. Phillips shares her inspiring journey from growing up in Texas to becoming a doctor and a leader in the health care field, all while balancing family and the challenges of being a woman in medicine. 

Annie discusses how her mother’s path influenced her own career choices and the bond they share working together in healthcare. Together, they reflect on the challenges of motherhood, the importance of resilience, and the power of family support. 

Tune in on Spotify, Apple Podcasts or YouTube to hear a mother and daughter who are not only committed to improving children’s health but also to growing and supporting each other along the way.

The Project ADAM program at Cook Children's hosted a FREE hands-only CPR/AED demonstration on Tuesday, Oct. 22 at Cook Children's Medical Center - Prosper alongside special guests Prosper Fire Rescue and Police Department. Cook Children's also shared resources for drowning prevention and safe sleep education, free car seat checks, Build A Bear and Kona Ice!

Another event will be held at Cook Children's Medical Center - Fort Worth at the Atrium on Thursday from 1 p.m. to 4 p.m. Join us to learn how to save a life! Kids, be sure to wear your Halloween costume! We look forward to seeing you! 

Resources and Being Prepared

More than 700 schools in North Texas have partnered with the Project ADAM program at Cook Children’s to become a “Heart Safe” school. The program trains school staff members on CPR, how to use an automated external defibrillator (AED), and helps create an emergency plan. It also provides resources and support to become a Heart Safe school, which is renewed every year through training and requirements. Project ADAM is a free resource for schools and the community.

The likelihood of sudden cardiac arrest in children and young athletes is known to be enhanced by athletic participation. On average, a seemingly healthy young person suffers a sudden cardiac arrest every three days in the U.S. and it's the leading cause of death in exercising young athletes.

Project ADAM reiterates the importance of being prepared for a cardiac emergency, especially in sports and school settings, with CPR and an AED.

Athletic personnel need to recognize the threat to young athletes and properly prepare for sudden cardiac arrest. Every school or organization that sponsors athletic activities should have an AED, trained coaches, and a written Emergency Action Plan.

Cardiac emergency preparedness training empowers people to use the AED device. Texas requires all schools to have an AED, but often people don’t know where it is located, how to use it in an emergency or rely solely on the school nurse to use the device.

Sign and symptoms of pediatric heart disease

Sudden cardiac arrest (SCA) is when the heart suddenly and unexpectedly stops beating. SCA often occurs in active people with no history of heart conditions. In children, common causes are genetic, congenital or related to a sudden blow to the chest. If treated quickly, using an automated external defibrillator (AED), it is possible to restart the heart and increase the chances of survival. 

Pediatric heart disease has warning signs and symptoms that can go unnoticed. It is important to recognize the following:

• Fainting or near-fainting during or after exercise, emotion or surprise
• Dizziness or lightheadedness
• Extreme fatigue associated with exercise
• Extreme shortness of breath associated with exercise
• Discomfort, pain or pressure in chest during or after exercise
• Skipping or racing heartbeats
• High blood pressure
• Congenital heart abnormality
• Family history of sudden death prior to age 50 or known heart abnormalities

Not all episodes of sudden cardiac arrest are preventable because many of the kids do not have symptoms until they have the episode. For this reason, secondary prevention strategies are important.

About Project ADAM

Project ADAM, which is nonprofit and nationwide, aims to educate school systems, nurses, coaches, trainers, parents and others about pediatric sudden cardiac death and to establish emergency programs to help provide a timely and lifesaving response as emergency medical services are on their way to an incident.

Project ADAM was started in 1999 after a 17-year-old Wisconsin student named Adam Lemel collapsed and died while playing basketball. His parents helped start the Project ADAM program at the Children’s Hospital of Wisconsin in his memory. Cook Children’s is one of 35 hospitals and program sites providing free cardiac resources, including training and AED devices.

RELATED: How to Become a Heart Safe School

By Charlotte Settle

When 18-month-old Ace Coustol was born, he seemed perfectly healthy. At his six-week checkup, he was diagnosed with a heart murmur, but it didn’t present any immediate cause for concern.

What started out as a common cold in March of 2023 turned life threatening when Ace stopped breathing. His mother, Chantelle, brought him to the emergency room at Cook Children’s Medical Center - Prosper, where he was immediately put on oxygen supplementation and sent to a cardiology consultation. 

Upon completing an echocardiogram and an electrocardiogram, Ace was diagnosed with a congenital heart defect, Tetralogy of Fallot (TOF). Though he didn’t require urgent intervention and was released from the hospital after a few days, he was scheduled for mandatory open heart surgery a couple of months later.

About Tetralogy of Fallot (TOF)

The root word “tetra” translates to “four,” which means Tetralogy of Fallot consists of four heart defects. 

“It’s probably the most common cyanotic heart disease, meaning it can cause low oxygen levels,” said Ace’s cardiologist, Pamela Burg, M.D. with Cook Children's Heart Center - Prosper. 

The most common indicators of TOF include a large hole between the bottom two chambers of the heart, as well as thickened muscle bundles below the pulmonary valve that obstruct blood flow to the lungs. Sometimes, the valve itself can be too small or too thick, causing it not to open properly. 

“What happens is that some of the low oxygen blood can’t get to the lungs to get oxygen because of the obstruction in blood flow,” Dr. Burg said. “Since there's a wide open hole between the two bottom chambers, some of that blue blood gets pumped out to the body and causes the low oxygen level.”

Congenital heart defects like TOF are typically detected in prenatal ultrasounds or directly after birth. Ace, however, was a special case, having passed his newborn heart screen without any cause for concern. 

“It is possible that the amount of valve obstruction was mild enough when Ace was first born that it didn't cause a problem until he got a little bit older,” Dr. Burg said. “Once every couple of years, we'll have a case that escapes all those other means of detection and gets picked up when they're older, but it's usually picked up in infancy at the latest.”

Symptoms of TOF 

Without surgical intervention, TOF can be fatal. Hypercyanotic spells, commonly known as “tet spells,” happen when a child with TOF has a dangerous drop in blood oxygen levels, causing them to turn blue and sometimes resulting in seizures, difficulty breathing or even death. These spells often happen with increased activity and exertion, which is why doctors try to surgically repair the defects as early as possible.

Ace was considered a “pink tet” baby, meaning he did not experience drops in oxygen levels severe enough to make him appear blue. He did, however, show symptoms that concerned Chantelle before he was diagnosed.

Any time Ace got sick, his oxygen levels would drop to concerningly low levels. Occasionally, Chantelle would notice his body going limp and his skin color looking slightly off. He was frequently fatigued, extremely sensitive to changes in temperature and slept more than usual. 

“I thought he was just an easy baby, but now I realize his heart was just so tired,” Chantelle said.

Ace's Surgery

Last June, after postponing his initial appointment due to sickness, Ace finally had his heart surgery with Cook Children’s Medical Director of Cardiothoracic Surgery, Vincent Tam, M.D. The surgery lasted almost an entire day, but everything went as smoothly as possible. 

“Everything we prayed for, God answered,” Chantelle said. “Dr. Tam is incredible, his whole team was great and the nurses were amazing.”

According to Dr. Burg, Ace's surgery consisted of closing the hole between the bottom two chambers of his heart and opening up the muscle bundles below his pulmonary valve. Fortunately, Ace’s pulmonary valve itself was functioning quite well and didn’t require any intervention.

“Dr. Tam is very meticulous, because he knows that if he can save the pulmonary valve from an intervention in that first surgery, then it's possible Ace might not ever need another surgery,” Dr. Burg said.

Care Team Goes Above and Beyond

Though Ace’s procedure was a resounding success, he experienced a rare reaction to anesthesia—severe delirium—his first night in the hospital. He was crying nonstop in his sleep, and the only way to wake him up was to take him off all pain medication. Stressed, distraught and exhausted, Chantelle didn’t know what to do—but the Cook Children’s care team came to the rescue. 

Ace’s nurse didn't leave his side the entire night so that Chantelle could get some much-needed rest. She pulled out all the stops—including soothing toys and heat packs—to calm Ace down.  

“I was sobbing and felt so bad that I was trying to rest, but the nurse just looked at me and said, ‘Mama, go sleep. It's okay,’” Chantelle said. “As a parent, it’s so challenging seeing your child like that and I was just super thankful knowing she didn't leave his side.”

A Heart Hero

Now that Ace has recovered, he joins a community of people who are living remarkable lives with TOF—including three-time Olympic gold medalist, Shaun White.

“We anticipate Ace to have an excellent prognosis,” Dr. Burg said. “He should be able to grow and run and play just like any other kid, but we're still going to have to keep monitoring him throughout his whole life.”

This past February, Ace was honored as the “Heart Hero” at his sisters’ elementary school during American Heart Month. His sisters, Lennon and Indy, got to bring him on stage during a presentation from the American Heart Association and tell their classmates all about his journey.

“Ace is doing great, and he’s really proud of his heart,” Chantelle said. “He's so busy, so smart and so strong.” 

“Everything we do for congenital heart disease is to ensure these kids can have as normal of a life as possible,” Dr. Burg said. “We want them to be playing and going to school with no limitations, and we want them to be able to do everything they want to do in life.”

Courtney Peets was born with a rare and complex heart condition that was treated by pediatric cardiologists from her infancy through her teen years.

When Courtney moved to college, the new cardiologists she saw weren’t familiar with her type of defect. Those cardiologists didn’t have experience with young adults like Courtney, who was born with reversed heart chambers and arteries.  

“I ended up in the emergency room a couple times, but it’s so confusing in an adult world,” she said. “When you hook me up for an EKG (electrocardiogram), it looks like you’ve put the leads on incorrectly.”

Courtney was too old for pediatric cardiology at that point. But she didn’t quite fit in with adult cardiology care either. She didn’t know where to find a specialist for treating adults who have heart problems since birth, called congenital heart disease.

That’s when she joined a support group that introduced her to something she didn’t know existed: cardiology geared for adults born with heart defects. Referrals eventually led Courtney to the Adult Congenital Heart Disease (ACHD) program at Cook Children’s.

Now at age 40, Courtney makes an annual visit to see Scott Pilgrim, M.D., the program’s medical director. Dr. Pilgrim and his ACHD team at the Dodson Specialty Clinics in Fort Worth are able to monitor and help manage her ongoing heart issues. She’s proud to be a patient at Cook Children’s. In fact, every appointment is like a homecoming, because:

• The pediatric cardiologist who first saw newborn Courtney in the neonatal intensive care unit was James Allender, M.D., who helped establish the Cook Children’s Heart Center. Dr. Allender treated her through much of her childhood. 
• Courtney underwent open heart surgery at Cook Children’s at age 17.
• She used to be a registered nurse in the Cook Children’s Hematology and Oncology Center, where she connected with the joy and resiliency of her patients. 

Dr. Pilgrim has helped Courtney manage her blood pressure and other concerns so that she can keep up an active lifestyle of exercise, raising her two sons, and working as Chief Health Service Officer for Burleson Independent School District. She knows she might need heart surgery again someday. The ACHD program gives her confidence she’s in good hands. 

This month, we at Cook Children’s are celebrating the 10-year anniversary of our ACHD program. It was started in February 2014 because leaders at Cook Children’s saw a need. The ACHD services provide comprehensive care and support for hundreds of patients in their 20s, 30s and beyond. Here’s the background.

After Pediatrics

About 1% of all newborns have congenital heart disease, ranging from mild to severe. It used to be considered a pediatric condition because many children with severe defects didn’t survive to adulthood. Thanks to advances in diagnosis and surgery, more children born with heart problems are living longer. An estimated 1.4 million U.S. adults have a congenital heart disease. Their underlying congenital problems can lead to unique health challenges.

“This field of adult congenital heart disease has grown primarily because of the success stories we’ve had in pediatric cardiology,” Dr. Pilgrim said. “The incidence of congenital heart disease hasn’t really changed. Bur the lifespan of individuals growing up with congenital heart disease has tremendously improved.”

The ACHD program looks much like what patients often see in pediatric cardiology, such as EKGs and cardiac magnetic resonance imaging (cMRI), Dr. Pilgrim said. The program offers nutrition, social services, physical therapy, occupational therapy, noncardiac surgery, dental care and more.

Dr. Pilgrim also does pre-pregnancy consultations at the patient’s request. He and the patient discuss the risks for mother and baby. He assesses the structure, function and rhythm of the patient’s heart in those consultations.

“Sometimes we do an exercise stress test to see whether or not they have the aerobic capacity to handle the nine-month marathon of pregnancy,” he said. 

For patients who are already pregnant, the ACHD team works with colleagues in obstetrics and fetal medicine to create a plan based on the patient’s specific heart lesion. That plan includes delivery scenarios and the best options for anesthesia.

The future is bright for this growing subspecialty of cardiology, Dr. Pilgrim said. He pointed out that the adult congenital model at Cook Children’s stems from the Promise to improve the wellbeing of every child in our care and community.  

 “We haven’t neglected the fact that by virtue of us doing surgery as a child, now we have a growing population of adults with congenital heart disease who still need specialized care,” he said.

Repair and Continuing Care

Courtney was born in Fort Worth in 1983 with abdominal organs that were reversed, as well as reversed chambers and main arteries in her heart. Her smaller right ventricle pumps blood throughout her body, while her left ventricle pumps blood to her lungs – the opposite of a normal heart. The right ventricle muscle became progressively thicker, causing obstructed blood flow and low oxygen saturation when Courtney was a girl.

“My lips were always blue,” she recalled. “My parents let me do as much as I could. I played basketball, but I could probably play about a minute before I got tired.”

Courtney went in for regular checkups with Dr. Allender, who would draw pictures to explain how her heart worked. By the time she was 17, she needed surgery to replace a valve and to patch the leaky holes that were allowing the oxygenated and non-oxygenated blood in her heart to mingle. 

“I was the only teenager on the heart floor. There were little ones all around me,” she said. “I was kind of an anomaly because I'm one of the first generations that survived into adulthood with congenital heart disease.”

Courtney went through a short bout of depression after surgery, unaware of the link between congenital heart defects and mental health.  She couldn’t go to church camp that summer, or drink Dr Pepper, or hang out with her friends as much as she liked.

Medication after surgery helped keep her blood pressure down and her heartbeat more regular. And her oxygen levels improved. She was able to sing in the school show choir and assist as manager of the school sports teams. She went on to earn a master’s degree in nursing.

In her mid-20s Courtney experienced episodes of chest pain where her heart raced to 200 beats per minute. She and her husband didn’t think she could safely go through a pregnancy. That’s when Courtney found a support group for adults with congenital heart disease, which led her to a local cardiologist who specialized in adults with congenital heart disease and an obstetrician who specialized in heart disease in pregnancy.

Reassured that the obstetrician’s experience with other “heart mamas” would help get her body through the stress of pregnancy and delivery, Courtney became pregnant. It was a tough journey; she went into heart failure midway though, and the leaks inside her heart increased. Three weeks early, she delivered a healthy, 5 pound, 2 ounce baby boy. Courtney and her husband grew their family several years later by adopting their younger son. 

Courtney became Dr. Pilgrim’s patient several years after the ACHD program opened at Cook Children’s. She trusts that she’s in the right place with experts knowledgeable about congenital issues. Under Dr. Pilgrim’s guidance at annual appointments, she has come off of medications. She can run and lift weights.

She advises parents to make life as normal as possible for children with congenital heart disease. She feels fortunate her own parents raised her like she was “just Courtney” and not defined by her heart problem.

“I still needed discipline. I still had high expectations at school. My defect wasn't a crutch,” she said. “Sometimes I feel like we don't push our kids because they have something wrong. But a kid is a kid, and they're resilient. So just treat them like a kid. Let them be a kid, because that's going to make them more successful moving on.”

RELATED STORIES:

• Diving Heart First 
• Heart to Heart: Why This Mother and Daughter Share the Same Cardiologist

At the Cook Children's Heart Center, many of our patients grow up with us. We care for the needs of infants with congenital heart disease, and we stay with them all the way into adulthood. Our groundbreaking technologies and expert team of cardiologists, cardiac surgeons, diagnosticians, technicians and health care professionals make up our Adult Congenital Heart Disease program, which provides inpatient and outpatient services. Teenagers or adults with a previously confirmed or newly suspected diagnosis should be referred for a formal evaluation. Because when it comes to patients with congenital heart disease, we're here for life. 

A little over a year ago, Robert and Christina Ryan couldn’t imagine their daughter’s future. They were struggling just to come to terms with her present as their baby lay fighting for her life in the Cardiovascular Intensive Care Unit (CVICU) at Cook Children’s Medical Center - Fort Worth. 

In early January 2023, an illness sent Dorothy “Dottie” Ryan to Cook Children’s Emergency Department where the Ryans learned their daughter’s heart was failing. Dottie was 2 months old at the time. While her illness was brought on by a common cold virus, its severity was exacerbated by a congenital heart defect known as ventricular septal defect (VSD).

A VSD is a hole in the wall between the two lower chambers, or ventricles, of the heart. In the United States, about 1 in every 240 babies are born each year with the defect, making it the most common heart defect in infants, according to the Centers for Disease Control. 

The presence of a VSD allows blood to flow abnormally between the two ventricles, impairing the heart’s ability to pump blood throughout the body and to the lungs. Large VSDs can cause too much blood flow to the lungs, leading to difficulty breathing and fatigue with exertion. 

Because a baby’s greatest form of exertion comes when eating, the presence of a large VSD can lead to poor feedings and inadequate growth. If left untreated, it may also cause irreversible damage to the lungs and to the heart. 

The Ryans knew before Dottie was born that she had a VSD. However, in many cases, the hole closes on its own in-utero or after birth, so they weren’t overly alarmed by the diagnosis. 

But an echocardiogram soon after Dottie’s birth revealed she had not one, but four, VSDs. Dottie would eventually need surgery to close the holes. Over the next few months, Dottie’s cardiologist followed her condition and progress closely, giving her time to grow and develop as much as possible before undergoing a complicated surgical repair.

“Having multiple VSDs is relatively rare, occurring in about 10% of VSD patients,” said Greg Barker, M.D., Dottie’s cardiologist at Cook Children’s Medical Center - Fort Worth. “Often small VSDs will close on their own while large defects need to be repaired. Patients with multiple VSDs often have small defects that ultimately close spontaneously or do not require treatment. So Dottie’s case, with multiple large defects requiring surgical closure, is quite rare, and quite challenging to treat, requiring a very skilled surgeon.”

The Journey to Surgery

The multiple defects meant Dottie’s heart struggled to pump efficiently on a good day. Add to that even a mild cold, like the one that sent her to the Emergency Department in January 2023, and you have a recipe for the heart becoming overwhelmed and unable to pump oxygen-rich blood throughout the body to support healing. Dottie’s heart simply could not cope with the increased workload necessary for fighting infection.  

“So we got admitted into the CVICU and that's when this journey started,” Christina said. “I remember the doctor telling us she’s in heart failure and we need to schedule surgery, but we had to let her get better from the cold first.”

Dottie did get better and was released from the medical center on January 18 to await surgery in February. But two days later, Dottie began having trouble breathing again and the family returned to the Emergency Department. Within 45 minutes of arriving, the Ryan’s baby girl was on a ventilator. 

The culprit this time? Three bacterial blood infections. 

“It was the hardest night of our lives,” Christina said. “But I felt like the team was amazing. Two cardiologists and the ER physician were there. I was so scared, but I was so thankful for that team that was saving her life in front of my eyes. I hope to never be in that situation again, but it was amazing to see all of these people who spend their whole lives saving children like Dottie. That whole night was miraculous.”

Over the next few weeks, Dottie’s condition improved again but she needed to remain in the hospital to continue the intravenous medications that helped fight infection and stabilize her heart. As the days went by, her heart needed more and more support, prompting doctors to schedule her surgery sooner rather than later.

The Best Gift

On the evening of February 22, 2023, which happened to be Christina’s birthday, Dottie’s physicians convened to discuss a surgical plan. That night, Christina took a rare break from the hospital to have dinner with her older children while her husband stayed with Dottie. While at dinner, she received an unexpected call with surprising news that moved her to tears. Dottie’s surgery was scheduled for the very next morning. 

“It was the best birthday gift ever,” Christina said. “To see this whole team of people mobilize 12 hours before surgery was amazing to me.”

On surgery day, many of the cardiac intensivists who cared for Dottie in the weeks prior stopped by the waiting area to visit with the family, with one taking a moment to pray with them. 

“Before they took her away to surgery it just felt like Dottie was so important,” Christina said. “Even though they see hundreds, if not thousands, of kids every year, in that moment they saw so much value in her little body and showed she was worth fighting for. We already knew that, but it was amazing to see these doctors and nurses value and love her, too.”

During the 8-hour surgery, Vincent Tam, M.D., medical director of Cardiothoracic Surgery at Cook Children’s, successfully patched three holes in Dottie’s heart. The fourth, which could not be patched, closed on it own a few months after surgery. 

Dottie spent the next few weeks at Cook Children’s recovering from surgery. Because she stopped taking a bottle or nursing while on the ventilator before surgery, she needed a feeding tube for adequate nutrition. Shortly after an additional procedure to place the feeding tube, Dottie was able to go home in March 2023. 

Little Girl, Big Smile

Although a tiny infant at the time, Dottie made a big impact on the staff at Cook Children’s. She’s known for her smile, even attempting to grin while on the ventilator. 

“As Dottie’s condition improved, we learned her sweet smile and endearing demeanor which made caring for her such a joy,” said Brynli Clayton, BSN, RN, CCRN, CVICU nurse supervisor at Cook Children’s. “Working in a high acuity environment our staff knows all too well the reality of patients who do not get better, which makes the ones that do that much more special. Watching Dottie continue to grow, when she comes by for visits, and hearing updates about her development seals in our minds that the work we are doing matters.”

To celebrate Dottie’s first birthday, the Ryan family collected pacifiers and donated them to the CVICU in recognition of the kindness the family says they experienced at Cook Children’s.

Now 16 months old, Dottie is in full toddler mode and doing her best to keep up with her siblings, 5-year-old Eddie and 3-year-old Lucy. She still requires nutrition support but is learning to eat on her own more and more each day. 

And the future the Ryans couldn’t imagine for their daughter a year ago is now full of hope and as bright as her signature smile.

“Thankfully, Dottie has had an excellent repair,” Dr. Barker said. “While there are still things that we are watching, I expect her to do very well and be able to have a normal, healthy life.”

Through it all, the Ryans learned to cherish the triumphs, no matter how small. 

“I’d encourage other families facing a challenge to find joy in and celebrate the tiny victories because those can give you tremendous hope,” Christina said. “They did for us.”

Angel Alderete and Yolanda Orduno, of Odessa, know the challenges of navigating the health care system for a child with medically complex needs, especially when living hundreds of miles from the care their baby requires.

Alderete and Orduno’s daughter, Renata Sofia Alderete, was born Jan. 8 with a diaphragmatic hernia, or a hole in the muscle that separates the chest from the abdomen. The couple learned of the complication with their developing baby when Orduno was about four months along in her pregnancy.

A diaphragmatic hernia allows the abdominal organs, such as the intestines, stomach and liver, to creep into the chest.

“It’s very serious and a lot of times lethal,” said Bannie Tabor, M.D., a maternal-fetal medicine specialist and medical director of the Fetal Center at Cook Children’s Medical Center. “It can compress the lungs and prevent them from developing normally. It can push the heart over and prevent it from functioning. A lot of times we see it with other anomalies of the heart or other genetic anomalies.”

Babies born with a diaphragmatic hernia often need immediate breathing support followed by surgery to repair the defect. Some babies require assistance from a heart-lung device called ECMO (extracorporeal membrane oxygenation). But not every medical facility has an ECMO machine or pediatric surgeons that can perform the surgical repair.

Orduno’s obstetrician in Odessa initially sent her to a specialist in Midland who confirmed the diagnosis and told the family their baby would need a higher level of care than could be provided in their West Texas home. That’s when the family was referred to the Fetal Center at Cook Children’s Medical Center – Fort Worth.

As any parent of a child with a complicated medical condition knows, navigating the health care system can be complicated, time consuming and overwhelming. Add to that the need for care in an unfamiliar city, at an unfamiliar medical center, with unfamiliar doctors while hundreds of miles from home, and it’s downright daunting.

That’s where Cook Children’s Fetal Center comes in for parents facing a difficult diagnosis for their unborn child.

“The Fetal Center is like a health-care concierge service for high-risk moms and babies,” said Mandy Little, the fetal nurse coordinator that oversees Cook Children’s Fetal Center. “The goal is to have one point of contact that coordinates and schedules all of their referrals for specialists and tests.”

Helping to Make Patient Journeys Easier

Mothers with high-risk pregnancies or whose unborn babies have been diagnosed with a medical condition often need to see multiple specialty physicians and undergo multiple diagnostic exams and tests during their pregnancy. Many times, these appointments and tests need to occur in a specific sequence so that doctors have the scans and information they need to inform their diagnosis and treatment plan. If the family lives out of town, they’ll often need to relocate to Fort Worth well in advance of delivery.

“Once the diagnosis is suspected or made, they'll be referred to the Fetal Center to be evaluated and receive consultation with all the different specialists,” Dr. Tabor explained. “We'll make a plan for postnatal care and then typically we'll try to relocate the family about a month before their due date. They’ll usually stay at the Ronald McDonald House and then either await spontaneous labor or we'll pick a delivery date.”

Orduno and her baby needed to be followed by a radiologist, pulmonologist, cardiologist, and surgeon.

“I could not imagine being a parent and having a baby that needs a fetal ECHO, MRI, pediatric surgery and craniofacial, for example,” Little said. “If the Fetal Center wasn't here, that patient would most likely have to call those subspecialties or wait for them to call them and the appointments wouldn't be on the same day. There would be different contact people for every clinic, and there wouldn't be any coordination to them. If you are having to call back and forth between different clinics and trying to get appointments on the same day, it actually can be very difficult.”

The Fetal Center main streams this entire process, giving moms-to-be a single contact with a nurse coordinator who knows how to connect the dots between referrals, specialty physicians and their clinics, diagnostic testing, scheduling and even little things like knowing where to park when arriving for appointments.   

This can be especially helpful for families like Alderete and Orduno who live out of town.

Little and the Fetal Center team coordinated all of Alderete and Orduno’s visits. This included coordinating mom’s many referrals to multiple physicians and clinics, scheduling her appointments, helping the family navigate hospital parking and plan accommodations for their long-term stay prior to and following their baby’s birth.

“Once we were at Cook Children’s every day, the hospital kind of kept getting smaller,” Alderete said. “But the first time we showed up, it's like, ‘Oh my God, where do I go? What do I do? Where do I start?’ I want to say that Mandy walked us through everything and sent us as much information as she could for us to be able to find all of these places.”

Renata spent nearly three months in Cook Children’s Neonatal Intensive Care Unit. She underwent surgery to repair her hernia and an additional procedure to insert a feeding tube. Today, Renata is home in Odessa with her mom, dad and 7-year-old big sister. Her recovery continues as the family works to improve her oral feedings.

Alderete and Orduno encourage other parents to never lose hope.

“There's hope,” Alderete said. “They're really good doctors and nurses. Just follow the social worker or whoever you're in contact with. If you need anything, get with them and they'll guide you in the right direction. They won't let you fail. It's just a matter of being patient and having faith and moving forward.”

Orduno spent every day of Renata’s hospitalization at her baby’s bedside and says she learned to take things one step at a time.

“It's day by day,” she said. “Be patient and have faith and the day will come when the baby is ready to go home. You are really never alone. There is always somebody there with a few words that will give you hope and encouragement.”

Buffalo Bills defensive back Damar Hamlin suffered cardiac arrest after a hit during Monday evening’s game. The Bills said in a statement that he was given CPR on the field and his heartbeat was restored. On Tuesday, the Bills said Hamlin was in critical condition.

This incident stunned the sports world and community at large, and reiterates the importance of being prepared for a cardiac emergency, especially in sports and school settings, with CPR and an AED.

More than 530 schools in North Texas have partnered with Project ADAM at Cook Children’s to become a “Heart Safe” school. The program trains school staff members on CPR, how to use an automated external defibrillator (AED), and helps create an emergency plan. It also provides resources and support to become a Heart Safe school, which is renewed every year through training and requirements. Project ADAM is a free resource to schools and the community.

The likelihood of sudden cardiac arrest in children and young athletes is known to be enhanced by athletic participation. On average, a seemingly healthy young person suffers a sudden cardiac arrest every three days in the U.S. and it's the leading cause of death in exercising young athletes.

Athletic personnel need to recognize the threat to young athletes and properly prepare for sudden cardiac arrest. Every school or organization that sponsors athletic activities should have an AED, trained coaches, and written Emergency Action Plan.

Cardiac emergency preparedness training empowers people to use the AED device. Texas requires all schools to have an AED, but often people don’t know where it is located, how to use it in an emergency or rely solely on the school nurse to use the device.

Danielle Moyé, M.D., pediatric cardiologist and physician director for Project ADAM at Cook Children’s, encourages schools, parents and the community to see the large impact an AED and CPR can make on a person’s life if utilized effectively. She shared answers for a few common questions.

What causes cardiac arrest?

Cardiac arrest can be caused by different factors. In an exercise setting, cardiac arrest occurs secondary to an arrhythmia which prevents adequate circulation and perfusion of blood and oxygen to the brain and body.

Why is it important to quickly respond to cardiac arrest? How does it affect the person’s outcome?

Timing is of utmost importance when it comes to cardiac arrest. The rhythm that one is in during cardiac arrest is not a perfusing (pump) rhythm. This means that there is not adequate oxygen and blood flow to the brain and body. Restoring sinus rhythm is critical to prevent irreversible organ damage.

When do you use an AED vs administering CPR?

CPR should be administered as soon as a person is found down without a pulse. While awaiting an AED, appropriate CPR can result in continued blood flow and perfusion that the heart is not doing on its own.

Once an AED is available, pads should be placed on an individual’s chest and once turned on, CPR may be paused briefly while the AED is assessing the underlying rhythm. If the person has a shockable rhythm, the AED will recommend delivery of a shock which can restore sinus rhythm. This is a lifesaving device that the world should know about and everyone should familiarize themselves with.

What should parents and caregivers be aware of if their child participates in sports and other physical extracurricular activities?

As mentioned above, parents and caregivers need to be aware of sudden cardiac arrest. They should encourage the schools and sporting facilities to be aware of the risk, have respect for this risk, and arm themselves with knowledge on good CPR, the locations of AEDs, and have an emergency action plan in place should one need it.

What do you see as a cardiologist that you wish more people knew about?

I unfortunately, have seen many episodes of cardiac arrest associated with exertion and at rest. The patients that have the best outcome are those who had a prompt intervention with an AED. I wish every school and every facility had an AED in place and a team dedicated to responding to these types of emergencies.

Sign and symptoms of pediatric heart disease

Sudden cardiac arrest (SCA) is when the heart suddenly and unexpectedly stops beating. SCA often occurs in active people with no history of heart conditions. In children, common causes are genetic, congenital or related to a sudden blow to the chest. If treated quickly, using an automated external defibrillator (AED), it is possible to restart the heart and increase the chances of survival.

Pediatric heart disease has warning signs and symptoms that can go unnoticed. It is important to recognize the following:

• Fainting or near-fainting during or after exercise, emotion or surprise
• Dizziness or lightheadedness
• Extreme fatigue associated with exercise
• Extreme shortness of breath associated with exercise
• Discomfort, pain or pressure in chest during or after exercise
• Skipping or racing heartbeats
• High blood pressure
• Congenital heart abnormality
• Family history of sudden death prior to age 50 or known heart abnormalities

Not all episodes of sudden cardiac arrest are preventable because many of the kids do not have symptoms until they have the episode. For this reason, secondary prevention strategies are important.

About Project ADAM

Project ADAM, which is nonprofit and nationwide, aims to educate school systems, nurses, coaches, trainers, parents and others about pediatric sudden cardiac death and to establish emergency programs to help provide a timely and lifesaving response as emergency medical services are on their way to an incident.

Project ADAM was started in 1999 after a 17-year-old Wisconsin student named Adam Lemel collapsed and died while playing basketball. His parents helped start the Project ADAM program at the Children’s Hospital of Wisconsin in his memory. Cook Children’s is one of 35 hospitals and program sites providing free cardiac resources, including training and AED devices.

RELATED: How to Become a Heart Safe School

Videos:

• Chapter 1: The Adam in Project ADAM
• Chapter 2: Understanding Sudden Cardiac Arrest
• Chapter 3: Being Prepared in a Cardiac Emergency
• Chapter 4: Implementing Project ADAM in Your School
• AED Drill
• Learn How to Save a Life using an AED and Hands Only CPR!

Cook Children’s Health Care System has successfully achieved six rankings in the U.S. News and World Report’s Best Children’s Hospital list for 2022-2023. This is an impressive and exciting jump from 2021 when Cook Children’s ranked nationally in two specialty categories.

The report, which was released today, uses clinical data to measure patient safety, infection prevention and adequacy of nurse staffing. Out of 284 children’s hospitals in the U.S., only 90 ranked in at least one of the 10 pediatric specialties evaluated. The following six Cook Children’s specialties were named among the top programs:

• Pediatric Neurology and Neurosurgery - #29 in the nation
• Pediatric Diabetes and Endocrinology - #38 in the nation
• Pediatric Orthopedics - #41 in the nation
• Pediatric Pulmonology and Lung Surgery - #43 in the nation
• Pediatric Cardiology and Heart Surgery - #48 in the nation
• Pediatric Cancer - #50 in the nation

“For more than 100 years, Cook Children’s has been committed to providing the best quality medical care for children. The U.S. News and World Report rankings further validate the tireless dedication of our staff to fulfill our Promise,” said Rick W. Merrill, President and CEO of Cook Children’s Health Care System. “As we look toward the future, with the opening of our new hospital in Prosper, Texas, later this year, we are excited to bring our world-class pediatric care to even more children and families.”

Out of the six specialties ranked on the Best Children’s Hospital list, all but one are currently operating at Cook Children’s Pediatric Specialties – Prosper. Neurology, endocrinology, pulmonology, cardiology and pediatric cancer services are all available for new patient appointments. 

By Eline deBruijn Wiggins

A family and community are inspired after a 15-year-old boy was revived for the second time in his life by an automated external defibrillator from the Project ADAM program at Cook Children’s. Dirk Green symbolizes the importance of education and training for heart conditions, and having an AED in schools.

In April, Dirk, a sophomore at Weatherford High School, collapsed and lost consciousness when he was at school and heading to the restroom. Fortunately, just a few weeks earlier, the Project ADAM program at Cook Children’s trained school staff on how to use an AED, created an emergency plan and provided resources to become a “Heart Safe” school. 

Project ADAM is a nonprofit, nationwide program that creates Heart Safe schools through free training, support, cardiac emergency preparedness resources and AEDs. When Dirk collapsed, the school staff knew exactly what actions to take and how to use the AED properly.

The program’s mission is to educate school systems, nurses, coaches, trainers, parents and others about pediatric sudden cardiac death and to establish emergency programs to help provide a timely and lifesaving response as emergency medical services are on their way to an incident.

Weatherford High School is one of 532 schools in the Project ADAM program at Cook Children’s.

The first time Dirk was saved by the AED device from Project ADAM was while he was in middle school. He was shocked twice to get his rhythm back.

“I’m very thankful for Project ADAM,” Dirk said. “Please put one in your school because you never know when you’ll need it. It’s better to be safe and have it.”

During the April incident, Dirk was brought back by the AED and was taken to Cook Children’s Medical Center.

“They told me the AED’s eighth shock brought him back,” said Dirk’s mother, Amanda Green. “A 15-year-old kid is still here because God wanted him to be and because y’all put Project ADAM at his school.”

Project ADAM is a national nonprofit program that started in 1999 after a 17-year-old Wisconsin student named Adam Lemel collapsed and died while playing basketball. His parents helped start the Project ADAM program at the Children’s Hospital of Wisconsin in his memory. Cook Children’s is one of 35 hospitals and program sites providing free cardiac resources, including training and AED devices.

The Weatherford ISD Director of Health Services Ramona Villarreal, Weatherford High School Campus Nurse Echo White and the Weatherford High School staff took action to become a Heart Safe school and impact Dirk’s life.

“When our children walk into school we don’t know what’s going to happen,” said Sarah Thieroff, Project ADAM Project Coordinator at Cook Children’s. “Dirk is why we do what we do. There are so many people to be thankful for and it’s incredible how we can make this change and save lives just like Dirk. You just never know.”

Cardiac emergency preparedness training empowers people to use the AED device. Texas requires all schools to have an AED, but often people don’t know how to use it in an emergency or rely solely on the school nurse to use the device, says Thieroff.

“I encourage parents everywhere to use your voice, ask these questions, and approach your school nurse,” Thieroff said. “Ask, do we have an AED? Does our school have an identified CPR/AED trained emergency team and does our emergency plan include the AED? Is our school doing a regular AED drill to test their response prior to emergency medical responders? We can all work together to save more lives and we need parents everywhere to advocate for that change.”

When Dirk was 8 years old, he was diagnosed with hypertrophic cardiomyopathy and ventricular tachycardia after he passed out during wrestling practice. That’s when he had a defibrillator placed in his heart. He says he has passed out nine or 10 times, and his defibrillator usually worked to bring back his heart rhythm. During the two worst times, Project ADAM was there.

“I’ve always seen it as if I’m supposed to be here then I’m supposed to be here. If I’m not supposed to be here, then it’s all planned,” Dirk said. “It’s sort of a reason to go out and live your life, live in the moment. You have to do stuff while you’re here and not wait until it’s too late.”

Dirk said he reminds his parents, siblings and friends that they shouldn’t worry because worrying won’t change anything.

“He doesn’t realize how much he gives me the strength to keep going,” Amanda said. “If he can handle it and be that mature at 15, what do I have to complain about? I’m just thankful for the higher power in God, the AED device and it being at Weatherford ISD but mostly for the strength that he gives me.”                                                                                                   

Amanda says she’s grateful that his episodes happened at school because, at the time, she didn’t have an AED device at home. Now, they will receive one for their home, just in case. She encourages all schools to sign up to be a heart safe school with Project ADAM.

“If they’re a parent or they love anybody, just think if something happened to that person and that was the device that could give them to you for a little bit longer,” Amanda said. “Our family needed it twice. I wouldn’t have my son right now if it wouldn’t have been there twice.”

Danielle Moyé, M.D., pediatric cardiologist and physician director for Project ADAM at Cook Children’s, met Dirk in April because she was on call on the day that he went to the emergency room. She encourages schools, parents and the community to see the large impact an AED can make on a person’s life if it’s utilized effectively.

“Project ADAM is a nonprofit organization and a free resource to schools and the community,” Dr. Moyé said. “We offer this education, ongoing safety training and AEDs when necessary, to make sure that if somebody collapses at school or on the field, they have an AED available and somebody in place to revive them."

The AEDs aren’t just placed in schools for students, but for the community, including teachers, parents, school staff and anyone who might need it. It’s also a lifesaving tool to keep during sporting events and games.

When Dirk was younger, he thought he would be an athlete, but he changed his plans after his heart condition. As a sophomore, Dirk loves to act in plays, whether he’s portraying Olaf in Frozen or the caveman in The Addams Family.

For his future, he’s interested in cooking, politics or theater, but one thing is for sure -- he’ll keep sharing his story.

“More people need to know about Project ADAM, AEDs, and that these heart conditions are a thing,” Dirk said. “Many people would never find out and they would end up dying before they never fully live.”

RELATED: How to Become a Heart Safe School

Project ADAM helps implement public access defibrillation programs (PAD) across Texas and the nation. The goal is to increase the awareness of sudden cardiac arrest (SCA) and establish emergency programs that help to provide a timely and lifesaving response.

Rosana Renzzo is the school nurse at Crow Leadership Academy in Arlington ISD. They became a Heart Safe School through Cook Children's in 2019. Below, Rosana shares how Cook Children's and Project ADAM have been beneficial for her school and others. 

What motivated you to work with Project ADAM?

“As a school nurse, my motivation to work with Project ADAM was promoting SCA awareness and getting the staff at my school prepared to act in case of emergency. At Crow Leadership Academy, the emergency response team, aka AED team, has the understanding that being prepared to perform hands-on CPR and use the automated external defibrillator (AED) can double or triple a person’s chance of survival from SCA. Their motivation is being ready to act and save a life. During our drills they practice calling 911, starting compressions and attaching the AED pads to the victim’s chest in less than three minutes.”

How has Project ADAM impacted your daily life?

“At Crow Leadership Academy, Project ADAM helped us understand the gap extends even to those trained in CPR, as to when to use the AED and why.”

What’s been the most beneficial Project ADAM resource for your school and/or district?

“The guidance and support to create our AED team/emergency response team, AED drill videos, hands-on CPR training and AED wall signs."

Do you have any advice for schools/others that are on the fence about working with Project ADAM?

“At Crow Leadership Academy, we film our AED drills so we can improve as a team. Our suggestion for other schools is to record the drill for team evaluation and improvement. We also started educating students in fifth and sixth grade, about SCA, CPR and AEDs. A good amount of our students live with their grandparents and they show great interest in learning CPR and when to call 911. Our suggestion is to promote a Heart Safe School week and involve students and parents to get information about heart disease and prevention.”

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.”

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.”

“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.

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.

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

For most of the first 20 years of his life, Michael Jankowiak never played ball or even owned a toy. His debilitating cerebral palsy wadded his fingers into a tight fist. He barely moved his hands, except to drive his electric wheel chair.

Then, during a visit to his neurologist, every changed. During a BOTOX® session at Cook Children’s, Fernando Acosta Jr., M.D., a neurologist at the Jane and John Justin Neurosciences Center, told Michael's mother, Lynn, that a surgeon on staff could possibly make a big difference in her son’s life.

Lynn was told Pamela Sherman, M.D., performed surgeries on children with disabilities. 

The original intent of the surgery was to help children clean the palms of their hand and aimed at improving hygiene for patient with significant contractures (the permanent tightening of muscles, tendons ligament or skin that results in a loss of motion in the affected joints).

But the sides effects were, as Lynn puts it, “pretty remarkable.”

Patients who need this surgery often demonstrate limited function with the contracted limb preoperatively. Things such as the ability to trim finger nails, avoid skin breakdown in the palm or elbow and the ease of nursing care with dressing, bathing and transferring to the wheel chair are the focus of surgical intervention. 

"Placing the upper extremity in a more functional position and releasing contractures often has a wonderful added benefit of improving use,” Dr. Sherman said. “Suddenly, the patient with previously limited spontaneous use of their limb has a hand that they are able to use to push a wheelchair control, use a communication board or hold an object.  A little goes a very long way for them.”

For the first time since he was a baby, Michael, who is now 24, opened up his left hand and played with a toy. Michael even held his own glass and brought it to his mouth to take a drink.

“This surgery has given him something new with his life,” Lynn said. “He has never been able to find a toy that he could play with. We took a golf-sized rubber ball. It’s elastic and put a rubber band on it. It looks like it came out of a gum ball machine. But when he’s playing with it, he grins from ear to ear. He can now even hold the ball and drops it for the dogs to play with him.”

After receiving a second surgery on his right hand that summer, Michael could now play on his iPad. He can swipe and select different videos to watch on YouTube.

What may have seemed so routine to most families has been nothing short of a miracle to Lynn because of how far her son has come.

Lynn described her first few months after she learned Michael had cerebral palsy as “fuzzy.” She lived in a terrified blur of emotions and cried for the first year after learning of his diagnosis.

But through her tears Lynn kept her resolve, beginning with one decision – Michael would be transferred from the family home in Abilene to Fort Worth to be treated by Cook Children’s. They then moved to Fort Worth to stay closer to Cook Children’s.

“To see your baby crawling, trying to learn to walk and then all of a sudden he’s not moving, was horrible,” Lynn said. “We insisted he be transferred. If he had not gotten transferred Michael would not be alive. I believe that with all my heart. I would not go anywhere else.”

The first month he stayed in the Pediatric ICU. Since then Michael has been seen by a plethora of specialties at Cook Children’s including Infectious Disease, Neurosciences, the Heart Center, Radiology, Surgery and Rehabilitation Services for issues ranging from pneumonia to cerebral palsy.

Michael stopped moving his extremities at 18 months and was diagnosed at that time.

Mark Shelton, M.D., was the physician on-call the day Michael first arrived at Cook Children’s. Dr. Shelton, a member of the Cook Children’s Physician Network, continues to be Michael’s primary care physician.

“Dr. Shelton, even though he is a specialist, I want him involved in everything,” Lynn said. “I trust him completely. I honestly think Dr. Shelton saved Michael’s life. He’s wonderful and so is his entire staff. He has such wonderful nurses. But all of Cook Children’s has such great nurses.”

Medical Director of Orthopedic Services David Gray, M.D., has also been there for Michael through multiple operative procedures associated with cerebral palsy.

“Dr. Gray is amazing. I remember him when he joined the Cook Children’s staff,” Lynn said. “A few years ago Michael broke his femur. When the ambulance came I told them I wasn’t going anywhere but Cook Children’s. Dr. Gray wasn’t on call that day, but somehow they got in touch with him and Dr. Gray managed to be there when we needed him.”

And now even today, after all this time, Lynn believes Cook Children’s works miracles for her son.

“It’s really the entire system,” Lynn said. “Everybody works so well together. It’s one of those places. I remember how I felt from the first time I walked in at 2 in the morning. It’s just comforting. You knew you were going to be treated well and your child was going to be taken care of by everyone.”

The official cause of death for Davis Allen Cripe was a "caffeine-induced cardiac event causing a problem arrythmia."

The teen reportedly consumed a large Diet Mountain Dew, a cafe latte and an energy drink over the course of two hours.

“Davis, like so many other kids and so many other people out there today, was doing something (he) thought was totally harmless, and that was ingesting lots of caffeine,” said Richland County Coroner Gary Watts said. “We lost Davis from a totally legal substance.”

Cook Children’s Medical Director of Cardiology, Deborah Schutte, M.D., warns that too much caffeine can be harmful to children.

“We frequently see children with palpitations. One of the causes of palpitations is increased consumption of caffeine such as that found in energy drinks,” Dr. Schutte said. “Caffeine can cause the heart to pump at an unnatural pace, resulting in palpitations.”

A cup of coffee has roughly 100-200 mg. of caffeine. One study from the Consumer Reports reported that energy drinks have on average 20 percent more caffeine than a cup of coffee.

The American Academy of Pediatrics states that "caffeine - by far the most popular stimulant - has been linked to a number of harmful health effects in children, including effects on the developing neurologic and cardiovascular systems."

The AAP continues that energy drinks are never appropriate for children or adolescents and that "caffeine-containing beverages, including sodas, should be avoided."

“It wasn't a car crash that took his life,” Davis' father, Sean, said of his son. “Instead, it was an energy drink. Parents, please talk to your kids about these energy drinks. And teenagers and students: please stop buying them.”

Imagine your child’s heart after consuming too much caffeine. The heart starts to pound and flutter; this may even be felt near the throat. If the child also feels dizzy, has shortness of breath or chest discomfort, seek emergency medical attention immediately. It is possible for cardiac arrest to occur.

Will every child have this reaction? “No, but why take the chance,” says Dr. Schutte.

Loaded with caffeine, sugar and stimulants, energy drinks have become a nearly $40 billion industry worldwide.

And while much of the marketing may seem targeted for young people, health experts warn the caffeinated energy drinks on the market may be particularly harmful for kids.

The American Academy of Pediatrics (AAP) says these drinks “get their ‘energy’ from large doses of caffeine and sugar. Most have a caffeine equivalent of three cups of coffee and as much as 14 teaspoons of sugar.”

Along with the high amounts of caffeine and sugar, some energy drinks contain other supplements such as taurine, an amino acid about which little research has been conducted.

Organizations ranging from the AAP to the Food and Drug Administration have come out strong against these high energy drinks. A study published in the Journal of the American Heart Association says energy drinks may cause harmful changes in blood pressure and heart function.

The article states that there are currently more than 500 energy drink products available on the market with claims to boost physical and mental alertness. It goes on to report that “in line with their increased popularity is a coinciding rise in energy drink-associated emergency department visits and deaths, which has led to questions about their true safety profile.”

A 2015 Mayo Clinic study found that even one energy drink may increase heart disease risk in young adults.

U.S. poison control centers states that between 2010 and 2013, almost half of the more than 5,000 cases of people who became sick from energy drinks were children.

If your child or teen expresses a need for energy drinks to stay alert and attentive at school or during sports, make sure he or she gets adequate amounts of sleep each night. Additionally, eating a balanced diet with all the necessary vitamins and minerals will ensure your child is well nourished and help him or her feel more energized.

“Overall, I think it’s a bad idea to allow children to consume energy drinks,” said Corey Mandel, M.D., pediatric cardiologist on staff at Cook Children’s. “While the drinks may not significantly affect one child, another child may be at a higher risk for heart problems. Energy drinks and caffeinated beverages increase heart rate and blood pressure, which can adversely affect heart function and even lead to abnormal heart rhythms.”

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.

After all, not even two heart surgeries can slow down the Kansas State, and Arlington Martin grad, sprinter down.

Albus, 20 years old and a sophomore, underwent his first surgery at Cook Children’s when he was only 3 days old for a serious heart defect called transposition of the great arteries. This rare condition (one in every 2,000 U.S. babies) is present at birth and occurs when the two main arteries in the heart are reversed.

A scar remains on Albus’ chest from the surgery and he knew that it was “a scary deal for my parents,” but it never prevented him from “doing what normal kids do.” He competed in football, soccer, track and wrestling.

He excelled as an athlete, but things became scary for him during the summer between his sophomore and junior year of high school.

Every time he worked out hard in football preseason, Albus felt like he was going to pass out and he became extremely light headed. Initially, he believed he was becoming dehydrated when he exerted himself. He began drinking gallons of water.

“I thought at first everyone felt this way,” Albus said. “But it kept happening. I just started pounding water. I thought everything was going to be OK, but it didn’t get any better. I felt a pain in my chest and thought I should get this checked out. I was a little scared. I didn’t know what was going on. I believed that God had a plan though and that everything would be good once it was all over.”

After feeling a pain in his chest, Albus returned to Cook Children’s to visit his cardiologist, Richard Readinger, M.D. Dr. Readinger found that the surgery Albus needed as an infant required the arteries to be detached and then reattached. A kink was caused by one of the arteries. Dr. Readinger compares the condition to what happens to a garden hose when it gets knotted up.

Vincent Tam, M.D., medical director of heart surgery at Cook Children’s, performed Albus’ second surgery to repair his coronary artery distortion heading into the 2013 football season. Dr. Tam went through the same scar from Albus’ first surgery as a baby.

Albus needed time for his chest plate to heal in his sternum. No one thought he would return to football. Except Albus. He passed the stress test and made it in time for the end of the season.

He continued to play sports the following season and excelled enough to earn a spot on the Kansas State track and field team as a sprinter.

“I just knew God didn’t stop me from playing or competing in sports,” Albus said. “He must want to me to pursue everything the best I possibly can. Everything has turned out for the best. I just want to do the best I can be and continue to work to get better.”

Don’t try to slow Nick Albus down.

Black worked at the Cook Children’s Heart Center for nearly 10 years before deciding to transition over into adult cardiology, but soon realized just how much she missed working with kids.

“A few years after I left, I was really ready to come back to Cook Children’s because I missed it so much,” said Black. “Nobody leaves here because it is such a good company, so I had to wait a few years to get my foot back in the door.”

Her years of hard work and determination paid off, as Black has finally found her way back to Cook Children’s.

“I’m back in the field of cardiology and doing things that I like, so I’m excited,” said Black.

She will be joining one other arrhythmia clinical assistant to perform diagnostic testing for the Heart Center, splitting her time between the medical center and an outpatient clinic.

“They hired me because the job is very busy and very stressful, and since the clinics are so big and the cardiology department is so huge, they have needed help for a while,” said Black.

Although Black is familiar with working at Cook Children’s, so much seems new to her now as the medical center has greatly expanded and evolved over the past 10 years.

“In the 10 years I have been gone it has actually doubled in size, so I’m still getting used to everything,” said Black. “It’s completely different from when I left.”

Black says she is most looking forward to returning to the unique work environment of Cook Children’s, where the atmosphere and care for patient families is unlike anywhere else.

“Cook Children’s has high-quality, professional care, but in a very relaxed environment with the patients because you are here to help make their day,” said Black. “Despite the horrible things they may be going through, you still have to cheer them up. So working here makes you feel good because you know you’re helping somebody, especially kids.”

- Written by Victoria Shelton

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.

According to the study, approximately 15 percent of 2-year-olds consume as much as 4 ounces of coffee daily. It’s a practice, health experts say, that comes with a dangerous dose of health risks.

The study followed 315 pairs of mothers and infants who were participating in an analysis of weight change during a child’s first week and its impact on body mass index at age 2. While examining diets, researchers found that 48 of the participating mothers were feeding their 2-year-olds coffee as part of their daily fluid intake.

Infants and toddlers of Hispanic mothers were more likely to drink coffee than those of non-Hispanic mothers, according to the study, but researchers did not examine further to determine why. Female infants were also found to be more likely to drink coffee than male infants.

Cultural practice may be one of the reasons some children drink coffee at younger ages, according to the study. In some countries, including Cambodia, Australia, and Ethiopia, children under 5 are given coffee.

“I think too much caffeine in childhood is a bad thing and worse in the case of a younger child,” said Joel Steelman, M.D., endocrinologist at Cook Children’s. “Coffee consumption by younger children is a big deal. I wouldn’t recommend parents start this practice. There are much healthier options. Caffeine could interfere with sleep – naps and bedtime. Overconsumption of caffeinated drinks could lead to symptoms of dizziness, headaches, mood changes and seizures.”

The U.S. Federal Drug Administration (FDA) has not provided guidelines on coffee consumption for children, but previous studies suggest there are potential negative health impacts, including Type 2 diabetes, depression, obesity and sleep disturbances. The American Academy of Pediatrics (AAP) recommends against the inclusion of caffeine in a growing child's diet.

Deborah Schutte, M.D., cardiologist and medical director of Cardiology at Cook Children’s, said her chief concern regarding toddler coffee consumption is the cardiovascular effect, particularly increased heart rate and high blood pressure.

“It boggles my mind why any parent would give a toddler caffeine. Toddlers are wired enough, why would anyone want to add to that?” Schutte asked. “My concern with caffeine and toddlers is more about tachycardia and arrhythmias. Caffeine can cause the heart to pump at an unnatural pace, resulting in palpitations.”

Schutte also points out that giving toddlers coffee could lead to dehydration, particularly since caffeine is a diuretic.

A 2013 study found that 2-year-olds who drank coffee or tea between meals or before bedtime were three times more likely to be obese in kindergarten.

“Just because there are no guidelines, doesn’t make it OK,” Schutte added. “What people don’t consider is that there is caffeine in drinks and food that we don’t always realize, such as chocolate and coffee- flavored ice cream, so caffeine levels can sneak up on you.”

According to the FDA, the average American adult consumes approximately 300 mg of caffeine each day - the equivalent to between two and four cups of coffee.

Canadian guidelines recommend no more than 45 mg of caffeine for children ages 4-6. This is equivalent to one 16 ounce can of soda.

If parents are already giving their toddler coffee, it’s possible to wean their child off the caffeinated beverage, Steelman said. He recommends parents talk to their pediatrician about a weaning off caffeine schedule.

At the end of the day all volunteers were offered a chance to take our own ECGs. I got a knot in my stomach but I didn’t want to be a hypocrite, having told everybody how important screening is and then not doing it myself. I took my ECG and showed it to the cardiologist from Cook Children’s in order for him to tell me I was allowed to go home for the day. After this nothing went like it was supposed to.

I saw it in his face right away. It was like a sledgehammer to the head. This was not how I planned my day. I only took the ECG so I would know that nothing was wrong. There were no other options.

The cardiologist asked me to sit while he explained everything very carefully. I was diagnosed with a very rare but potentially deadly heart condition called Wolf-Parkinson-White Syndrome (WPW).

The only feeling was disbelief; I never thought it would have been me. It took me several days to fully grasp the fact that I had been diagnosed with something that had gone unnoticed my whole life. I had incredible support from the people closest to me and could not have gone through this without them, but I opted out of telling my peers about what had happened. I felt that if everybody knew, it might make it real. I could not allow myself to believe the truth at that point.

I had a heart ablation this summer and I was declared healthy a few months later. Now I notice the difference every day. I’ve had strange palpitations as long as I remember but I never thought anything was wrong. That’s how my heart had felt my whole life; I thought it was normal. It was not until they were gone that I could feel how a heart is supposed to feel.

I go back to that day at Cook Children’s a lot and wonder how my life might have been different. I might still not know. I would have been happy not knowing. I might never have known; but what if I would have found out after it was already too late? There is a chance that I would never have had any problems, but there is a chance that waking up that morning saved my life. I’m happy that I don’t have to guess between the two because now I know which option I chose: I chose to do something about it.

For more information

Mia Eriksson wrote this blog for us in 2013. We thought Heart month would be a good time to revisit her important story. Cook Children's Fort Worth and Arlington locations are offering FREE sports EKGs during the month of February. with a referral Heart conditions in children and young adults go undetected too often. Early detection could save your child's life! Learn more about Cook Children's Heart Center by clicking here.

“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.

Who were they kidding? There's no emotional prepping anyone could do at that time. So, off to the OR for delivery we went. Talk about scared! They gave my baby a 10 percent chance of survival and they gave me a death sentence if they didn't deliver right then and there.

Graysen was brought into this world three months early weighing 1.4 pounds and not crying, or breathing. I remember seeing that he was the size of the nurse’s hand when she was working on him. I got to take one look at him before they had to intubate him immediately to get him breathing, since he was turning blue.

They then hurried away with him to the delivering hospital’s NICU. He was supposed to be born on March 15th (spring break baby) and he came into this world right before Christmas. With only a diaper the size of a tiny flip cell phone (which was the phone we had 10 years ago!), and under a heat lamp for warmth, inch by inch, ounce by ounce, he grew.

Weeks into life, the doctors decided to start feeding him by NG tube (Nasogastric tube that runs through the nose and into the stomach for feeds).

He did fine tolerating the feeds until he got an infection in the intestines, called necrotizing enterocolitis, also known as Nec. This made his belly swell up and, if not cured properly, could have resulted in a hole in the intestines, which is fatal. Surviving Nec was thought to be low. The doctors called to inform me that he was not doing so well and needed to be transferred by Teddy Bear Transport to the Medical Center’s NICU.

They loaded him up and took him by ambulance after two months in the NICU where he was born to begin his next few months of growing. Cook Children’s slowly nursed him back to better health, and, luckily, Graysen did not need surgery on his intestines. Miraculously, he pulled through another obstacle.

Weeks went by before they attempted to feed him again. In the meantime, the doctors had a central line surgically put into his chest so he could receive his nutrients properly. After a few weeks of feeds, the doctors started to see major improvement. They took him off the respirator and put him on a high flow nasal cannula to help with Graysen’s oxygenation and breathing. He did great with this new machine. Now breathing well, it was time to introduce the bottle at around 3 months. He took it, but not all of it.

The doctors had to decide what to do about the feeds he was leaving behind. They decided to put a G-button surgically into his stomach so that the left over feeds could be received by tube. This was the turning point. The hardest decision I had to make. Once that G-button was placed, I would have a medically dependent child.

After being in the NICU for five months, this was the only way he would be able to come home, and I was ready for that day. I gave the doctors the approval, and off to his first surgery he went. That was the first of 14 surgeries he would have throughout his first 10 years of life. Surgeries followed including fundoplication (an operation to prevent stomach contents from returning to the esophagus), hernia repairs, tonsillectomy, and a tethered spinal cord repair. Just to name a few. His spinal cord was taut at the end and neurosurgery was scheduled at 12 months. He caught meningitis after the surgery and, once again, beat dangerous odds.

Graysen went through so much that he didn’t eat. For six years, he was completely tube fed. He went through many years of intensive feeding therapy. He still didn’t want to eat orally. I put him in kindergarten and he saw his peers eating by mouth. That sparked an interest and, at 6 years old, he started eating. Now he demolishes whole cheeseburgers and fries! Not only has he beat death numerous times, he's gone through 14 surgeries and countless doctor appointments getting him to where he is now. This kid is here for a reason. This month we celebrate Graysen's 10th year of LIVING! Graysen is my Christmas miracle.

I could not have done this alone. I am so thankful that I had, and still have, a great network of people working together at Cook Children’s. Without their dedication to their job and to children, I don’t know if Graysen would have made it. Dr. Nancy Dambro was one of his main doctors from the time Graysen was born. Dr. Michael Deitchman has been his pediatrician through all the rollercoaster ups and downs. I can’t thank him enough for his support, countless visits and patience with us. We also see Dr. Jose Iglesias, Dr. Jill Radack, Dr. Bankole Osuntokun and Dr. Fernando Acosta.

It takes a village in Graysen’s case, and I’m glad our village is Cook Children’s!

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.