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.

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

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

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

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

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

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

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

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

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

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

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

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

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

Signs and Symptoms of Sudden Cardiac Arrest

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

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

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.

Brighton Weeks needed surgery when he was just 2 weeks old to repair his rare and complex heart defects.

For follow-up care, his family chose pediatric cardiologist Danielle Moyé, M.D. at Cook Children’s Heart Center in Prosper, close to their home in Celina. During a routine checkup with Dr. Moyé, a test called an echocardiogram showed a ballooning mass of tissue filled with blood. Brighton needed another open-heart surgery to patch the leak.

Then, just before leaving Cook Children’s Medical Center – Fort Worth after the second surgery, 8-month-old Brighton had a small stroke. The stroke caused temporary weakness but no apparent long-term damage.  

Brighton made a remarkable recovery. He learned to eat on his own – after more than a year on a specialized diet fed through his nose – and has grown into a tall and energetic 2-year-old. He’ll likely need heart surgery again, probably when he’s a teenager, to replace the artificial tube he has now with a bigger device.  

“He’s doing perfectly,” Dr. Moyé said. “All of his oxygenated blood is going to his body and his brain, and all of the used-up blood is coming back to his lungs to get the oxygen.”

Like Brighton, nearly 40,000 infants in the United States each year are born with heart defects, according to the American Academy of Pediatrics.  American Heart Month gives us a chance every February to spotlight the specialized services Cook Children’s offers for patients whose heart chambers, valves or blood vessels are affected by congenital heart disease. 

Babies, children, teens and young adults come for diagnosis and advanced care at the Cook Children's Heart Center, where surgeons perform about 475 surgeries annually.  

“The initial diagnosis is understandably upsetting,” Dr. Moyé points out. “What I tend to tell parents is how resilient these babies are, and how well they do most of the time with cardiac surgery. I always tell them we’re there every step of the way.”

Correcting Defects

Kristin Weeks had a normal pregnancy with Brighton, born on April 14, 2022. As soon as the umbilical cord was cut, her 8-pound, 13-ounce son turned gray from low oxygen. A tube was inserted in Brighton’s airway to help him breathe.

Tests on his heart showed several misshapen structures, including a narrow arch of the aorta, a missing chamber wall, and a valve in the wrong place. As a result, oxygenated and deoxygenated blood were merging in the same chamber.

“His heart was mixing old blood and new blood and wasn’t able to circulate new blood through his body,” Kristin said.

Brighton soon underwent 14 hours of surgery to close the hole and insert a tube that connected his right ventricle to the artery that carries blood to his lungs. His nourishment came through a nasogastric tube through the nose, down the throat, to the stomach until he was 15 months old.

A checkup with Dr. Moyé in December 2022 took an unexpected turn when a blood-filled bulge was discovered along a surgical suture line. Concerned that the pseudoaneurysm could rupture, Dr. Moyé sent Brighton to Cook Children’s Medical Center – Fort Worth, where cardiothoracic surgeon Eldad Erez, M.D. removed the bulge and made reinforcements to prevent additional leaks.

The surgery went well. But a week later while in the hospital waiting on discharge paperwork, Kristin noticed Brighton’s mouth trembling oddly. Fearing a seizure, she called for help. Right away, Brighton received an MRI, which pointed to a stroke. His left arm was weak and he couldn’t blink his left eye.

Strokes happen whenever a clot blocks flow of blood to the brain. To treat the stroke, doctors started Brighton on anticoagulant medication. Within about 48 hours, the left-side issues had resolved. After a stay in the Cardiac Step Down Unit (CSDU) at Cook Children’s, Brighton returned home.

Growing and Thriving

Along his path to recovery, Brighton has seen experts from Cook Children’s neurology and hematology in addition to cardiology and the stroke team. Kristin is grateful for specific people who went the extra mile – including a pharmacist, a chaplain, and a child life specialist – to make the family’s experience the best it could be. 

For instance: When they arrived for the surgery in Fort Worth, a nurse wanted to know how Brighton’s parents handled his medications, feedings and other care at home.

“She sat next to me and said, ‘Tell me about it,’” Kristin said. “It felt calming and relieving that they were listening to me. I felt heard.”

Brighton can eat by mouth now. Scars from the surgeries have faded. He enjoys playing with his stuffed Peaks the Dragon, collecting Beads of Courage at his medical appointments, and entertaining his mom and dad Brian and three older siblings.

“He lives up to the name ‘Bright’ in Brighton,” Kristin said. “He thinks he is a comedian and makes us laugh all day every day. He loves to play and interact with everyone he meets.”

He takes a baby aspirin daily to prevent blood clots as well as several medications to help his heart. Early Childhood Intervention (ECI) provides speech therapy. And he goes twice a year to visit Dr. Moyé, who monitors his growth, oxygen saturation levels, and any changes to his heart size and performance. If all continues to go well, the appointments can be cut back to once a year. 

RELATED STORY:
Three Open-Heart Surgeries and Thriving: Toddler Overcomes Multiple Congenital Heart Defects

To spot the signs of stroke, remember the acronym BE FAST: 

Balance - Is there a sudden loss of balance or coordination?
Eyes - Is there blurred or lost vision?
Face - Is one side of the face drooping or numb?
Arm - Is there weakness, numbness or loss of movement in the arms, legs or one side of the body?
Speech - Is speech slurred?
Time - If you or someone you know is experiencing any of these symptoms, call 911 immediately.

Advocate is not her middle name, but it might as well be. Shakyryn Napier, DHSc, RN, CPN, NEA-BC, director of the Heart Center at Cook Children’s Medical Center, is known for championing those who need support and shining a light on issues that deserve the spotlight.

This leadership won her a spot on the 2024 Dallas/Fort Worth Great 100 Nurses list. Napier was honored for the recognition on May 3 at the annual Great 100 Nurses dinner and celebration. The event honors 100 Dallas/Fort Worth-based nurses nominated by their peers for being role models, leaders, community servants, compassionate caregivers and significant contributors to the nursing profession, according to the DFW Great 100 Nurses organization.

“I am so humbled and honored to even be nominated and so grateful to be named a DFW Great 100 nurse,” Napier said. “I feel very blessed and so appreciative.”

Napier’s nomination form described her as “a commendable example for aspiring health care professionals” demonstrated by her completion of a doctoral degree. She’s also said to be a “risk taker” as evidenced by her bravery in sharing her personal tragedy so others may learn from what she endured. Her peers praise her “leadership prowess,” saying she has a unique ability to motivate and support her team even in the face of unprecedented challenges like the COVID-19 pandemic.

Ardent Advocate

Napier’s staff can always count on her to go to bat for them and get results. When a member of her nursing team met resistance from the Texas Board of Nursing for disclosing a treated mental health condition while renewing her license, Napier worked with the Texas Nurses’ Association to successfully advocate for policy change concerning a question about mental health treatment on the license renewal form. She and many of her fellow nurses believed the question could penalize and stigmatize nurses who had or are seeking treatment for a mental health condition.

Napier advocated that nurses should not encounter punitive measures for being honest about their mental health and treatment. In response, the Texas Board of Nursing revised its license renewal process and removed the question from the renewal application.

The change, Napier says, is one of the proudest moments of her career so far, primarily because the cause of destigmatizing mental illness is a personal one. Three years ago, tragedy struck her family with the accidental fentanyl-related death of her young adult son who had a mental health condition. Napier bravely put her own heartache on display to raise awareness for mental illness and its associated challenges.

“We have huge gaps in this society when it comes to mental health, and the weight of not having adequate mental health coverage for both children and adults is not sustainable,” Napier said. “Even as a nurse with the contacts I had, it was difficult to know where to turn when my son needed help for his mental health. I can't imagine someone who does not have the resources that I do having to navigate the system. We need policy that directs more funds to mental health providers and services.”

Climbing the Ladder

A native of Pennsylvania, Napier completed her nursing diploma right out of high school. By the time she was 20 years old, she was at the bedside doing the work she loves.

“Nursing was something I always knew I wanted to do,” she said. “I had a younger brother who passed away who had really severe asthma, so we were always in the hospital with him. That is where I got that first interaction with nurses and with the health care system, and seeing how people were so helpful just always stuck with me.”

In 2000, Napier and her husband moved their family to Texas seeking job opportunities and a retreat from the harsh winters. She joined the Cook Children’s family in 2008. Since then, Napier has risen through the ranks from night nurse manager to director of Med-Surg and Wound Care and now director of the Heart Center where she leads a team of approximately 200.

An active member of the Texas Nurses’ Association, Napier served on the Board of Directors, chaired the Policy Council, chaired the CEO search committee, and has been a member of the Government Affairs and Finance committees. She also served as president of her local Texas Nurses’ Association district, and received the prestigious District President’s Award for her outstanding contributions. She currently serves as the chair of the Texas Nurses’ Association  Diversity, Equity, Inclusion and Belonging taskforce.

A Mind for Policy

Napier's expertise in public health and nursing policy not only positions her as a prominent figure at Cook Children’s but also distinguishes her as a leader within the industry. She says the lack of health insurance options, especially for children, tops her list of policy concerns today.

She has good reason to be alarmed. Just recently, the Texas Health and Human Services Commission (HHSC) denied Cook Children’s Health Plan (CCHP) a new STAR and CHIP Managed Care Services contract, putting 125,000 CCHP members in jeopardy of losing health care coverage and, in turn, access to vital health services and providers beginning Oct. 1, 2025.

In any given year, roughly 50% of CCHP members will have an encounter with a Cook Children’s provider across the system. That figure is even higher among CCHP’s STAR Kids population.

“It is scary to think that children will be without the great care that we give here because they lose insurance coverage based on the decision of the state,” Napier said. “Finding affordable insurance in the marketplace is hard and expensive, and this decision leaves our kids and families with limited options. It’s just so unfair and sad to see. There definitely needs to be some policy changes with this.”

Cook Children’s is appealing HHSC’s decision, citing that the state's scoring process lacked transparency and unfairly disadvantaged regional, nonprofit community plans like CCHP. As a locally operated organization with deep roots in the community and first-hand knowledge of its unique needs, CCHP is able to tailor its many programs and services to address community and member-specific health barriers such as food insecurity, lack of transportation, access to behavioral health care and preventative health programs and much more. The state’s scoring process does not adequately capture and measure this benefit.

Model Mentor

These days, much of Napier’s work is spent planning for the current and future growth of Cook Children’s cardiac program and making rounds to check on staff in the units she oversees. These include the Cardiac ICU, Cardiac Step-Down Unit, Echocardiography Lab and Cardiovascular Operating Room. Along the way, she never misses an opportunity to share the wisdom she’s acquired in nursing over the past 20 years.

Her advice to new nurses? Never compare yourself, your progress or your journey to others.

“When new nurses start orientation, they see the other nurses who can document quickly or do an assessment from across the room and they compare themselves to those nurses and feel inadequate. Absolutely not,” she said. “I tell them that they’ll be that skilled one day, too. And I tell our seasoned nurses to be kind to the new nurses because we have all been there.”

Congratulations, Dr. Shakyryn Napier! Thank you for modeling, teaching and living the Cook Children’s Promise of “Everything for the child,” and for advancing the practice of nursing with excellence.

The saying “timing is everything” could not be more true for Crystal Schnabel, Eric Massey and their son Rogan Massey. Rogan was born on April 13, nearly six weeks early, but not a minute too late.

A few days prior to her son’s birth, Schnabel had an appointment scheduled with maternal-fetal specialist Holly Dunn, M.D., an Abilene-based high-risk obstetrician with Cook Children’s Health Care System. Because Schnabel experienced low amniotic fluid levels in her first pregnancy, she needed to be monitored closely. But a scheduling conflict led her to cancel her 34-week appointment. Two days after her missed appointment, just to be on the safe side, Schnabel, a radiology technologist, asked a fellow sonographer to do a quick ultrasound to check her fluid levels. Her colleague told her to stop by the next day during a break in her schedule.

On April 13, at 2:45 p.m., Schnabel met her colleague for the scan, and they both noticed something peculiar. Rogan’s heart rate was irregular and beating faster than normal at 254 beats per minute. The sonographer urged Schnabel to go to the labor and delivery department at Hendrick Health in Abilene for an exam. Schnabel alerted her obstetrician, called her husband and made her way to the hospital.

There, she was hooked to a fetal heartbeat monitor that produced what appeared to be normal readings for the baby’s heartbeat, but Schnabel’s obstetrician asked Dr. Dunn to take a second look.

“Her OB called me, had me look at the monitor strip and something didn’t sit right with me. So I told her to send mom over,” Dr. Dunn said.

Schnabel and Massey immediately made their way to Dr. Dunn’s office located just across the street from the hospital. By this time, it was a little after 3 p.m.

Schnabel was seen and counseled by Dr. Dunn’s nurse practitioner who recommended that she be admitted to the hospital for overnight monitoring. As the couple left to make the short trek back across the street to the hospital, Dr. Dunn reviewed her sonogram images and made the call to act sooner than later.

When the couple arrived at Hendrick Health’s labor and delivery department they received shocking news. Schnabel needed an emergency cesarean section.

In the five minutes it took Schnabel and Massey to walk from Dr. Dunn’s office to the hospital, the labor and delivery team received a call from Dr. Dunn to alert them that Rogan’s heart was in supraventricular tachycardia (SVT), a fast and erratic heartbeat that prevents the blood from pumping throughout the body, potentially leading to congestive heart failure and death.

“The baby’s heart was barely moving,” Dr. Dunn said. “The rate was quick, so the electrical conductivity was passing through, which is what we were detecting on ultrasound and monitors, but the heart itself was barely moving and weary from working so hard. There can be some arrhythmias that are benign, that are sustained for days to weeks. But SVT, in this case, is something that can only be sustained for a few minutes to hours before the baby either comes out of it spontaneously or death occurs.”

Rogan needed to be delivered immediately. His life depended on it.

“We walked in and all of the nurses are standing around and anesthesia is ready,” Schnabel said. “The doctor was ready. The NICU team was there, and I was in a gown with all my jewelry off and an IV going within a matter of probably four minutes. It was very fast.”

The couple knew something was wrong but they had no idea how serious it was.

“Everything happened so fast that it was hard to understand the severity,” Massey said.

Rogan was born at 5:25 p.m., a little more than two hours after Schnabel met her colleague for that impromptu ultrasound.

Schnabel and Massey were able to see their newborn for a few brief moments before he was whisked off for care. Around 8:30 p.m., Cook Children’s Teddy Bear Transport arrived at Hendricks Hospital to transport Rogan to Cook Children’s Medical Center – Fort Worth for treatment of his dangerous heart arrhythmia.

Collaboration Counts

Schnabel’s on-the-fly ultrasound that fateful Thursday set in motion a number of collaborative efforts between pediatric specialists that resulted in an accurate diagnosis and treatment plan, and much of it came together during the couple’s short walk from Dr. Dunn’s office to the hospital.

“It's a reassurance to know that they're in sync with one another to be able to communicate so quickly and get an accurate specialty-type diagnosis within five minutes of the scan,” Massey said.

After connecting the dots between Rogan’s unusual heart rate, the ultrasound, monitor readings and the report from her nurse practitioner, Dr. Dunn made an urgent call to Lisa Roten, M.D., a pediatric cardiologist at Cook Children’s Medical Center. Dr. Roten is the medical director of Cook Children’s fetal electrocardiography program. Scott Pilgrim, M.D., medical director of Cook Children’s adult congenital heart disease program, was also looped into the case.

“There's constant collaboration between us, but in this case, it was just so seamless and easy and I was able to orchestrate the management plan between Dr. Roten and myself, and then Dr. Pilgrim became involved as the handoff happened from here to the medical center in Fort Worth,” Dr. Dunn said. “There was also so much collaboration with the Hendricks Health staff, with anesthesia, the nursing staff and the neonatologist.”

Dr. Roten recommended an immediate c-section for any chance of saving Rogan’s life.

“SVT, or atrial flutter in this case, is not life-threatening if for a short duration,” Dr. Roten said. “However, if it does not break, as was the case here, it results in death. This baby’s heart function was very poor and we did not have time for medicines to be given to mom to try to correct the rate.”

Undetected arrhythmias are the suspected cause of many stillbirths where there is no known genetic syndrome or structural problem, according to Dr. Dunn. If the sequence of events had been any different, Dr. Dunn says it’s likely Rogan would not be alive today.

“I think a lot goes into Rogan’s story,” Schnabel said. “I had the sonogram on that specific day and at that specific time when my coworker had an opening on her schedule and I could have her scan me, and the fact that his heart did what it did at that exact moment is proof that he is here for a reason. We were able to go to labor and delivery and have him within 15 to 20 minutes of showing up and the OR team was ready. Every little thing had to happen for him to still be alive. Through it all I was reminded I’m not in control, God is. This was his plan, not mine. The progress we’ve made over the past few weeks has been from above and I’m thankful for every moment.”

It’s unclear what caused Rogan’s arrhythmia, as is the case with many babies who develop the condition. Rogan spent 19 days in Cook Children’s Neonatal Intensive Care Unit where he was diagnosed with a type of SVT known as atrial flutter, in which the upper chambers of the heart pump rapidly. He underwent two cardioversion procedures to shock his heart back into a normal rhythm and is now on medication to control his heart’s pumping function.

It’s possible he’ll grow out of the condition altogether. If not, he may need a cardiac ablation in the future. An ablation is a procedure where doctors burn or freeze tiny scars into the heart to block irregular electrical pulses so that the heart stays in a normal rhythm.

“The electrical system of a newborn is immature and most babies outgrow the arrhythmia by one year of age,” Dr. Roten said. “But this rhythm was harder to control and sometimes they need to go to the cath lab to have an ablation.”

For now, Schnabel and Massey, are back home in Abilene with their newborn enjoying their full house, which includes Rogan’s brother and sister, both 10 years old.

“I'm just thankful for the support that we've had from the community,” Massey said. “Our friends and family have been overwhelmingly supportive.”

“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.

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

On Feb. 2, 2016, Ashleigh and her husband David cried tears too, but this time it was waiting for their little boy to get through heart surgery.

It's amazing how far they all have come. 

When she was 20 weeks pregnant, Ashleigh Wilford went with David, her husband, for what was supposed to be a routine sonogram.

But during the visit, things didn’t go as planned or even hoped. The sonogram detected a possible heart condition. The concerned couple called Lisa Roten, M.D., a pediatric cardiologist at Cook Children’s Heart Center, to schedule a fetal echo cardiogram. Dr. Roten and her Fetal Echo Program team confirmed the initial diagnosis of a transposition of the great arteries.

Transposition of the great arteries is a rare heart defect in which the baby’s two main arteries leaving the heart are transposed. Because of this, he wouldn’t be able to properly oxygenate his own blood.

Since she found out about her baby’s diagnosis early in her pregnancy, Ashleigh was closely monitored and cared for by the Heart Center staff at Cook Children’s before her son was born.

Now, a plan could be put in place to prepare for the birth of their little boy – Graham.

“Throughout the pregnancy, they were preparing for him, which was a big burden off of us,” Ashleigh said.

Before the birth, however, both admit that there was no way to be ready for what was to come.

“I don’t think we really knew what to expect. We just thought ‘he’s going to be born, they’re going to fix it, and he’s going to be fine,’” David said.

After carrying Graham full term, the day finally came for Ashleigh to give birth to a 7 pounds, 9 ounce boy.

“I’ve wanted to be a dad for a long time. When I saw him for the first time, you’re just taken away by that moment because you see that new life,” David said.

However, their first few moments with Graham were fleeting. Within minutes, he was whisked off to the Neo-natal Intensive Care Unit at Cook Children’s.

“We had about five minutes with him. Talk about having a moment as a dad. David went straight from the delivery room to Cook Children’s and had to be strong for Graham and for all of us,” Ashleigh said.

In the first few days of Graham’s life, things seemed to be going fairly well. “Everyone kept saying ‘he looks better than expected after everything he'd gone through,’” David said. At 6 days old, Graham was ready for surgery with Vincent Tam, M.D., medical director of cardiothoracic surgery at Cook Children’s.

However, on the morning of his surgery, something unexpected happened. But this time it was a welcome surprise. Dr. Tam and his team told David and Ashleigh that they had a very important role that day, a role that ended up being an emotional, beautiful moment during such a scary time.

“One thing that we didn’t know we had the opportunity to do, but that the staff here was very adamant about, was us holding him before surgery,” Ashleigh said. “Until that point, holding him was too dangerous, due to the amount of lines that were helping keep Graham stable. They made sure that we had a good hour each. That was invaluable.”

Although Graham will not remember that moment like his parents will, he responded in a way that amazed everyone.

“Because of the medicine, you could tell he just wasn’t feeling very good. He was clenching himself in pain,” David said. “But when we would hold him, his numbers would level out. You could tell that he felt us.”

But then Graham was taken away from them, and the fear settled in.

“They gave us hourly updates,” David said. “Then they called at one point and said ‘everything is still fine, but we did another echo and saw something we want to go back in and fix.’ So they had to put him back on bypass.”

The entire surgery lasted about nine hours. But as hard as that day was for them, Ashleigh and David agreed that it was even more difficult to see Graham after the surgery.

“When we went back in after surgery, there was a piece of mesh over his chest, but we could see his heart pumping,” Ashleigh said.

“He was pale and cold… it was like he wasn’t alive,” David said. “Seeing a little 6 day old baby look like that… it was tough.”

However, the staff surrounding David and Ashleigh constantly made them feel reassured and comforted.

“It was the worst day of our lives,” Ashleigh said. “But even while experiencing the worst day of your life, it was comforting to see the CVICU nursing staff and the physicians so under control. They’re not panicked. They’re just working. So seeing them take care of him took away those initial gut feelings of ‘this is bad.’ Seeing how confident they were in treating him was a huge relief.”

Ashleigh is an employee at Cook Children’s. As a physician liaison, she spends her days informing doctors and health care providers throughout Texas about the specialties, treatment programs and physicians at Cook Children’s. Even before Graham's birth, she had promoted the fetal echo program at Cook Children's.

But now she speaks from first-hand knowledge the kind of care a patient can receive where she works.

“I can talk about the program and I’m able to explain it to people in a completely different way now,” Ashleigh said. “It has made me a better employee. I approach my job with a compassion that I don’t think I could have had until I was a patient family member.”

Graham made such rapid progress, however, that Ashleigh and David were not patients for long. Graham was at Cook Children’s just under three weeks before he was able to go home.

Two years after his surgery, Graham sees Scott Pilgrim, M.D., at Alliance Urgent Care and Pediatric Specialties every 6 months, which is near the Wilford’s home.

Graham is doing fantastic. We were recently told we could space our appointments out to every six months! And because of all the education we’ve received, David and I know what to look for and whether or not to call if we are concerned before then."

While their boy is still so young, Graham has already made his parents incredibly proud. His strength pushes them every day, amazing even them.

“I was told there is something about these kids that spend time in the NICU, they’re just fighters,” Ashleigh said. “It’s true. You can’t really explain it, but we can already see it.”

Written by Elizabeth Sparks

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.

Little Charlotte Friessen, 7 months old, arrived at Cook Children’s only 30 minutes prior and was rushed to the Cardiac Intensive Care Unit. She needed an echocardiogram on her heart so she could get the help she needed. She needed to relax to get the proper readings before treatment could begin. But Charlotte was afraid and unhappy.

The years of training and experience weren’t enough for Tiffany Cox, Jen Jones and Mary Brennan. They needed to find something new to calm Charlotte down to get the ultrasound imaging of her heart.

What to do?

“Charlotte hated the little Doppler on her. The three nurses were doing everything they could to help her,” Anne Friessen, Charlotte’s mom, said. “They were talking to her and nothing worked. Then one of the nurses said, ‘Let’s sing nursery rhymes. The nurses had a blast.’”

The nursery rhymes and lullabies worked to perfection. Charlotte stopped crying. At least until the nurses stopped singing to think of new songs. Each time they stopped, Charlotte began to cry. Soon, everyone hit their stride and even Lane Lanier, M.D., a pediatrician on the Cardiac Specialty Care Unit team, joined in on harmonies.

Cox spent most of her career working with adults in the Intensive Care Unit and Cardiovascular ICU. She says one of the things she loves about Cook Children’s that she couldn’t do in the adult world of nursing “is be silly and play.”

“I have found such a deep joy working with these children and babies. The needs of kids, the things that make them feel better, are usually so simple,” Cox said. “If a little spontaneous singing and making silly faces with my colleagues makes a child in the CVICU smile and feel better, I will do it all day long. I happened to be across the hall that day with my own patient, and heard this poor darling across crying her eyes out during the echo, and I really just wanted to come ‘play’ with my colleagues. They were trying everything to make her feel better.”

But come on - how many nursery rhymes do you know off the top of your head? “We even ‘performed’ a sing-song version of the theme-song rap from The Fresh Prince of Bel Air,” Cox said. The three of us and the patient’s mom are about the same age and grew up watching that show. I mean, who gets to do THAT at work?! I love this place.”

The singing also helped ease Anne’s mind for a little while too. After all, so much had happened in such a short period of time.

“They sang so many nursery rhymes,” Anne said. “I felt like I stepped into an episode of Grey’s Anatomy. They sang for the entire echo. It was really neat.”

A month earlier, Charlotte was taken to see her pediatrician in Andrews, Texas. During her well-child visit, doctors found she had a heart murmur. About three weeks later, a specialist in Lubbock diagnosed Charlotte with a coarctation of the aorta. This means a narrowing of the aorta, requiring the heart to pump harder to allow blood through the narrow part of the aorta.

The family was immediately rushed to Cook Children’s and immediately the care began for Charlotte.

“The nurses met us as soon as we got there,” Anne said. “Everyone was so great. They helped us handle the situation a little more peacefully. Up until then, I had been so wide eyed about everything that happened. We talked to Dr. Lanier and all the nurses, I felt so confident in their work. They were so happy that we chose their hospital. Dr. Lanier thanked us so many times for letting him take care of our daughter. It made me feel good. Even through this horrible situation, it gave me peace.”

The next day, Vincent Tam, M.D., Cook Children's medical director of Cardiothoracic Surgery at Cook Children’s Heart Center, performed the surgery to fix the aorta. Anne said she and her husband, Albert, felt comforted during the surgery. Since the heart murmur was detected, the family's church had been praying for Charlotte and now they were praying for everyone taking care for the little girl.

“So many people, from all over the place, were praying for Charlotte,” Anne said. “But they were not only praying for us, but our doctors and the nurses too. Everything just went so smoothly. We were home in less than a week.”

Other than getting her high blood pressure under control, which was expected after her surgery, Charlotte is back to her normal self. She’s sitting up, playing and holding her own bottle.

And while Charlotte may not remember her time at Cook Children’s, it’s a moment the nurses will never forget.

“It was a special few minutes to be able to serve her and her family in that simple way,” Jones said. “I love that being a nurse sometimes means lots of time management and critical thinking, and sometimes means simply singing nursery rhymes over a scared baby girl.”

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

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.

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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!

I can’t tell you how many times I’ve heard this from anxious parents as their child is having his echocardiogram done. In reality, a murmur is something that is heard, not seen.

In a normal heart, the valves make noises as they close, the classic “lub-dub” attributed to normal heart sounds. A murmur is an extra sound, “lub-shhh-dub.” Most of the time the murmur is innocent or functional, some may call it benign.

Innocent murmurs are simply sounds we hear as blood flows through a normal heart. More than two-thirds of children with normal hearts will have a murmur at some point in their life. There are classic innocent murmurs that occur at various times throughout a child’s life, and usually they go away on their own over time.

Aside from these are the pathologic murmurs, or sounds that occur because there is a problem with the heart, maybe a valve that isn’t working properly, a hole in the heart, or a vessel that is narrowed.

Typically there are characteristics that help distinguish innocent murmurs from pathologic murmurs. Louder, more harsh murmurs are more characteristic of pathologic murmurs. The timing that the murmur is heard is also important. Innocent murmurs are typically heard when the heart is squeezing (this is a systolic murmur). In the case of innocent murmurs, there is usually no need for further evaluation. Innocent murmurs don’t “progress” to pathologic murmurs. There is no need for activity restrictions and no need for antibiotics when the child goes to the dentist. In the case of pathologic murmurs, follow up, activity restrictions, and whether the patient needs antibiotics when he or she goes to the dentist all depend on what is causing the murmur.

Having said this, not all systolic murmurs are innocent. Murmurs heard when the heart is relaxing (diastolic murmur) are usually pathologic.

An echocardiogram is a test that helps us evaluate the heart in the event that the murmur sounds concerning. The probe, or camera, sends ultrasound waves toward the heart . This time it is about what we see. The waves bounce off solid structures and the machine organizes the returning signals into a 2D picture, which is displayed on the screen. The study also uses color signals to help determine the direction of flow, and Doppler signals to determine how fast the blood is traveling across different areas of the heart.

The cardiologist uses all of this information to determine if there is a problem and a treatment plan for the child begins. And to think it all begins with those first anxious moments of listening to a child’s heart.

About the author

Deborah Schutte, M.D., is the medical director of Cardiology at the 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.