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

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

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

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

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

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

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

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

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

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

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

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

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

Signs and Symptoms of Sudden Cardiac Arrest

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Phillip Burch, M.D., a cardiothoracic surgeon at Cook Children’s, performed three surgeries on Sydni before her first birthday. He says Cook Children’s Heart Center sees about 500 surgical cases a year, with around 300 of them being open-heart surgeries. Most cases aren’t as severe as Sydni’s.

“She has a canal defect where the central portion of her heart didn’t form appropriately,” Dr. Burch explained. “The veins that drain her lungs did not return to their normal position.”

Sydni is the Peña’s third child. They say her pregnancy was normal, until they attended a doctor’s appointment at the 20-week mark.

“After the scan, the doctor came into the room, and I remember her face was different,” Ashlea said. “The doctor said she saw an issue with Sydni’s heart on the anatomy scan and was referring us to a maternal-fetal medicine doctor to get it checked out.”

The referral would be the beginning of a very long journey and a new normal for the Peña family. At their appointment, the maternal-fetal medicine doctor explained the challenges their daughter would face after birth.

“The first thing I remember him saying is, ‘Your daughter has a condition called Heterotaxy syndrome,’” Ashlea explained. “This meant her stomach was on the right side of her body instead of the left, and this condition caused her heart defects.”

The family visited Kristal Woldu, M.D., a fetal cardiologist at Cook Children’s, and learned Sydni would require open-heart surgery within 24 hours of birth.

“My husband broke down and cried,” Ashlea remembered. “That was the first time he realized this wasn’t a minor inconvenience, but this was going to require immediate intervention.”

After learning the devastating news, Ashlea began reading stories from other families whose children were cared for by Cook Children’s Heart Center. Still, the news was hard to process.

“It became real when she showed us the diagram where normal body parts were supposed to be, compared to what Sydni’s looked like in the early stages. We knew we had a big hurdle ahead,” Tony said.

After Sydni’s birth, the family was told to plan for a six-week hospital stay. This meant figuring out how they were going to care for Sydni, as well as their daughters, ages 2 and 5.

“We moved into my brother and sister-in-law’s apartment, and they moved into our home to take care of our older girls,” Tony said.

With this arrangement, the Peña’s were never more than three to five minutes away from the medical center and someone was always able to be by Sydni’s side.

Sydni’s projected six-week stay nearly doubled into 82 days at Cook Children’s. The first half was spent in the Cardiac Intensive Care Unit (CICU). Sydni was then moved into the step-down unit when she no longer required intensive care. Ashlea remembers how exhausting this time was, and how long the days and weeks seemed to drag on.

“I would run home and shower and come right back. The in and out was draining,” Ashlea remembered.

During Sydni’s first surgery, she had a shunt placed in her heart to help with her pulmonary blood flow. The surgery was successful, but when she came off of the ventilator, she had a hard time maintaining her oxygen levels. Nine days after her first surgery, the doctors informed the family Sydni would need a second surgery to revise the shunt. To make sure the procedure was successful, the medical team left her chest open for a several days while they monitored her progress.

With back-to-back surgeries and Sydni being on a bypass machine, she began having feeding issues.

”She had terrible reflux. She vomited everything up constantly, and wasn’t gaining any weight,” Ashlea recalled.

The Peña’s remember being optimistic, but every time they got their hopes up about going home, Sydni gave them a sign she wasn’t ready. That stress became obvious to cardiac intensivist Lane Lanier, M.D.

“One morning, I was sitting next to her bed and Dr. Lanier squatted down in front of me and took my hand and said, ‘Ashlea, you have something called ICU fatigue. I can tell you’re at the point where most people want to scream and throw something out the window,’” Ashlea remembered. “He reassured me we were going to get our baby out of the hospital. He couldn’t promise it would be the next day or week but assured me we would follow Sydni’s timeline and go home when she was ready.”

Ashlea says those words gave her the strength to go on and continue fighting for her daughter’s full recovery.

“When something like this happens, you aren’t given a choice, you go into survival mode,” Ashlea explained.

During their time at Cook Children’s, the Peña’s family members brought their older daughters to the medical center to visit their sister, have lunch and play outside.

“Cook Children’s does such a good job helping siblings and families during difficult times,” Tony remembered. “The music room, arts and crafts, the game room… all of those things were good for us to explore with our older girls.”

When Sydni was released, she was sent home on more than 10 medications, as well as a G-tube for feeding. The Peña’s had to get used to being home alone and not having Cook Children’s staff there to help around the clock. They were also full-time parents to three children for the first time. Ashlea said having Sydni enrolled with the Cook Children’s Health Plan (CCHP) played a major role in transitioning home.

“The most helpful part of CCHP has been our patient advocate Jamie,” Ashlea said. “She helped us get therapies set up for Sydni, as well as made sure we had the right supplies for her tube feedings. Knowing there is a nurse advocate to call when we encounter an issue has been a stress reliever for my family.”

Today, Sydni has graduated from most of her therapies and even learned to do a somersault with the help of her big sisters. While Sydni has come a long way, she still has another major open-heart surgery later this year. This surgery, a biventricular repair, will give her two ventricles, like other human hearts.

“We hope that she has good longevity and a good quality of life,” Dr. Burch said. “Based on the imaging we have, it’s reasonable to presume we can provide a good technical outcome for her.”

Sydni’s parents say they are grateful for Cook Children’s, as well as the valuable lessons they’ve learned along the way.

“I have learned to appreciate every moment of life because you never know when it’s going to be turned upside down for you,” Ashlea said.

The couple also offers advice for other parents who find themselves in their shoes.

“Do your research, speak up for your child, and ask questions,” Tony said. “Seek out trauma therapy once you can, it makes a huge difference once you realize everything you’ve been through.”