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.”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.”

“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.”

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.