By Eline deBruijn Wiggins

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

RELATED: How to Become a Heart Safe School

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.”

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

Liam lived from March 25 to Nov. 1, 2013, and spent much of his brief life at Cook Children’s with critical issues ranging from an operation to repair his intestines, to heart problems, to feeding concerns.

He seemed to be constantly fighting until it was too much for his little body to overcome.

Now a little over a year later, Vickie Phathaphone, Liam’s mother, looks back on her time at Cook Children’s with an emotion that may be surprising to some – gratitude.

Recently, Phathaphone reached out to Cook Children’s Facebook page. She wanted to thank the staff who treated her little boy.

“My family and I, including Liam, loved the medical staff at Cook Children’s and you guys gave us the most amazing experience and educated us well,” Phathaphone said. “The staff at Cook Children’s helped my family and me by teaching us how to not be afraid to hold our little Liam.”

Phathaphone said doctors and nurses updated her family every day and Cook Children’s updated her by cellphone as needed. She said the NICU nurses taught her so much, ranging from the importance of breast milk and how to pump it, to how to carefully bathe, feed and hold her fragile baby.

“Although being a parent is natural, with Liam’s condition it was quite frightening,” Phathaphone said. “We did not want to hurt him, but we were reassured by the nurses what not to do and what to do. I loved how the staff treated Liam, as he was a part of their family, and I am thankful that Liam was under such amazing care.”

After letting a group of the physicians know about the letter, they were appreciative of Phathaphone’s kind gesture and began to reflect on the loss of not only Liam, but other children who have died too soon.

Surgeons Vincent Tam, M.D., James Miller, M.D., and Lisa Roten, M.D., a cardiologist, share with us what their life is like after the loss of a child.

Dr.Tam

He tries to stay in control as he fights back the tears.

But on this day, as hard as he tries, Vincent Tam, M.D., a pediatric heart surgeon at Cook Children’s, struggles to keep his composure. He’s thinking about Liam.

Dr. Tam performed two heart operations on Liam. All the procedures were successful, but other underlying problems were simply too much for the baby, who was born premature, to overcome.

In practice for 23 years, Dr. Tam copes with the death of a patient by compartmentalizing the loss. He tries his best not to dwell on it, so it won’t impact his performance in the operating room or his role as husband and father. Then, every once in a while, he receives a note or hears from a parent whose child has died, like the one from Phathaphone. The parents don’t want to express grief or even anger, but simply to say thanks.

“It’s hard because if somebody dies or somebody has a bad complication, I think, ‘Oh gosh, could I have done something differently?” Dr. Tam trails off and after a long pause continues to speak. “There’s all kinds of questions that you can ask as a Monday morning quarterback, but personally I’ve dealt with it in a way that I feel like I’ve … um …”

Again, a long pause as he composes himself. “I do the best I can with every surgery and that’s all I can do.”

Dr. Miller

Shortly after Liam’s birth, James P. Miller, M.D., a pediatric surgeon at Cook Children’s, operated on him to repair gastroschisis, a condition where the baby is born with the intestines on the outside of the body.

Even after 17,000 surgeries and 27 years as a surgeon, it only takes a quick glance at a child’s chart for the memories to come flooding back. He remembers Liam and his mom. He says he knew from being around her for a short period of time and the love and compassion she always showed to her child, Phathaphone would be a great mom.

Dr. Miller has gotten to know some patient families well over the years. Throughout his career, he’s been to many of their weddings, but he’s also seen death.

“It can devastate you for weeks,” Dr. Miller said. “It can be like reopening a wound when you realize it’s the first anniversary of a child’s death. You hope you have somebody in the hospital that you have helped or made a difference in their lives, just to get out of your rut. I don’t think people realize how much doctors do feel. When you do what we do with these kids, you do get attached to them.”

Dr. Roten

For the patient families who are cared for by Lisa Roten, M.D., a cardiologist who specializes in fetal echocardiography at Cook Children’s, they see someone who cares deeply for her patient families. But they also may be surprised to know that she understands Dr. Tam’s need for compartmentalization.

“The truth is, you have to do that,” she said. “You wouldn’t be a physician if you couldn’t do that. We have a work life and we have a personal life. I can’t carry that home with me. I do talk about the loss of my kids, but with the people who can empathize with me. I talk to my colleagues and staff, the other doctors and nurses, who cared for the child.”

Still, Dr. Roten admits to developing a special bond with most of her families and says a gesture like the one from Phathaphone and other parents means a lot to her. As much as the families sometimes need closure by writing a note or speaking to the doctors, Dr. Roten also needs to find a way to say thank you to the parents for entrusting their child’s care to her and goodbye to the children.

Dr. Roten makes every effort to reach out to families who have had a child pass and to go to the funerals whenever possible. It allows her to complete the circle of care.

“At the end of the day, we’re all humans. We are people who have families and we are touched by these families we see,” Dr. Roten said. “Even after the child dies, they never really leave our lives. There are ways that we continue on together. We take our cues from the family. If they ever want to reach out or touch base with us, that’s comforting to us. It is the end of a relationship that sometimes you’ve had for years and years with families and sometimes like in Liam’s case, it’s been shorter.

“But they are all so special to us.”

“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.