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

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.

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

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

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

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

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

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

For more information

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