17 minute read
Follow Your Heart
In the Fall of 2022, Neva Dengler hit a birthday milestone. It was one of those birthdays where you start to contemplate life a bit, and begin to approach things in a new way. She bought a new car and looked for ways to embrace life to the fullest, seeking out new experiences she might have otherwise disregarded. During that time, she kept seeing posts come up on her social media feed from the Sonoran Heights Middle School PTA. They were desperately seeking members. Neva has two children at Sonoran Heights, a 6th grade daughter named Kaylen and an 8th grade son, Travis. She was like many parents, and hadn’t really been actively involved in the school in the past. She rarely attended events on campus.
“I thought to myself, you know what, ok, I’m going to do it and join the PTA,” she exclaimed. “You know, why not and I can check that off my bucket list.”
What Neva didn’t realize at the time, was this small decision would end up changing her and her family’s lives dramatically. It started with one of the very first meetings she attended after joining the PTA, which was a November meeting with the principal and school nurse discussing an event at the school hosted by the Anthony Bates Foundation. Sonoran Heights Health Services Assistant, Kelly Davidson, had been working for years to try and get an AED, or automated external defibrillator, for the campus. An AED is used to help those experiencing sudden cardiac arrest. It’s a sophisticated, yet easy to use medical device that can analyze the heart’s rhythm and, if necessary, deliver an electrical shock, or defibrillation, to help the heart re-establish an effective rhythm.
“It was something that was near and dear to my heart,” said Davidson. “It is not something that I ever want to face on this campus without one, or be put in that position, so it was definitely very rewarding to help in the accomplishment of us getting one.”
The devices cost thousands of dollars and were not required or common back when the school was built. So Davidson had reached out to the Anthony Bates Foundation, a non-profit organization in Phoenix, who coordinates large screenings for the community in an effort to raise money for AEDs.
For those unfamiliar, Anthony Bates was 20 years old when he died from undiagnosed Hypertrophic Cardiomyopathy, or HCM. Anthony was an only child of Sharon Bates. He was an honor student, an Eagle Scout, and a Division I college football player at Kansas State University
“When he went to Kansas State as a football player, he was there a year and a half, and one day he called me on a Friday because he was concerned about making the team, because he wasn’t running as fast as he should be. I called the coach, the coach was going to look in on him on Monday. Monday came, and that is when he died.”
“Anthony didn’t have an opportunity to get a screening,” she continued. “He went all the way up to Division I football and nobody ever checked his heart. He had very limited symptoms.”
After Anthony’s death, Sharon made it her mission to begin promoting heart health and education. She held golf tournaments, solicited donations from various organizations, and found other creative ways to raise funds. By 2002, her efforts had succeeded so much that she needed to launch a foundation in her son’s name. Hence, the birth of the Anthony Bates Foundation and the cardiac screening programs nationwide.
The Anthony Bates Foundation now partners with schools and holds events offering discounted screenings to raise funds for the purchase of an AED for the school. Neva became integrally involved in the February 2023 event at Sonoran Heights Middle School, helping to coordinate and promote with the PTA, which was also Heart Awareness Month.
When the time came for the event, Neva’s husband, who ironically works in the cardiology field specializing in Information Technology and robotics within hospital operating rooms, encouraged her and the kids to go get screened. He was out of town on work and couldn’t attend himself. On February 25, 2023, Neva, Kaylen and Travis went to the Anthony Bates Foundation screening together at Sonoran Heights. When they entered, they were separating males and females, so Neva and her daughter went to one side and Travis went to the other. After the two girls were screened, Neva and Kaylen sat in the waiting room for Travis to finish. But Travis didn’t come back in, instead Sharon Bates did. She asked to see the parents of Travis Dengler.
“Right there I just…didn’t know what to do,” Neva said while choking up.
The screening consists of a two-page questionnaire, blood pressure check, an EKG or electrocardiogram, and an echocardiogram, or echo, which is a scan used to look at the heart and nearby blood vessels.
Sharon remembers that day well. “Travis was at the echo station and the echo tech, Carol, called me over, and we looked at him together, and we definitely saw issues.”
Sharon explained to Neva that they were going to put a rush on Travis’ results and send them to Phoenix Children’s Hospital for further consultation. The event is a screening, and any abnormalities need to be reviewed by a cardiologist. Neva waited on pins and needles for two long, stressful days for the results to come in, fearful of what they may say.
“My husband is out of town, I’m pacing trying to keep it together,” she remembers. “I need to keep it together as a parent, as a mom. I can do this.”
Sonoran Heights Health Services Assistant, Kelly Davidson, was in communication with Neva, and helped work with Sharon Bates to get the results as fast as they could. Kelly and Neva’s daughters are friends in school. “As a parent, I felt very much for her as a mom,” Kelly said. Finally, the results came in.
“I remember getting the results, and it was a bright orange piece of paper with a big exclamation mark in a triangle that says, ‘Urgent, take action immediately,’ Neva recalled tearfully.
Neva was told to immediately find a pediatric cardiologist who would do a full examination of Travis. The doctor confirmed what Phoenix Children’s Hospital saw, and what Sharon and her echo tech encountered that screening day.
Travis was diagnosed with an ASD, or atrial septal defect, which is a birth defect of the heart in which there is a hole in the wall (septum) that divides the upper chambers of the heart. An atrial septal defect is one type of congenital heart defect. He also had an issue with his mitral valve, which would play a key factor in their recommended course of action.
“All kids have holes in their hearts when they are in their mommy’s bellies,” explained Sharon Bates. “And then when they are born they are supposed to close. Twenty-five percent of the people in this country have open holes in their heart. And that’s why we have such a high stroke issue.”
The pediatric cardiologist explained to Neva and her husband that they couldn’t fix the hole in the heart the way they normally would, which is with a transcatheter. Because of Travis’ issues with his mitral valve, they would have to do open heart surgery. “So our hearts pretty much sank,” Neva said.
While there wasn’t an immediate rush on the surgery since he was born with this condition and had lived with it for the past 13 years, it was something the doctors recommended getting taken care of sooner rather than later. Travis was an active 13-year-old who played baseball, rode dirt bikes, and loved to go boating. Those types of activities have the potential to trigger something more serious, so Neva didn’t want to wait. “The emotional toll that it takes on you as a parent is so hard that it just needs to happen,” she said.
What made things worse and prompted the family to schedule the surgery quickly was Travis’ knowledge and awareness of just what was going on. He was present when the pediatric cardiologist gave the diagnosis. And less than two months before the screening, Travis sat with his family and witnessed with the world as Buffalo Bills defender Damar Hamlin collapsed on the field playing professional football. Travis was keenly aware of what had just happened to a worldclass athlete, who had to be administered an AED multiple times to keep him alive. Just how would that affect him going forward knowing that something tragic like that might happen to him?
“The world saw in January of last year how important an AED was,” Kelly Davidson said. “As much as that was an awful situation to play out in the public like that, sometimes something catastrophic like that can be eye opening to really understand.”
The Dengler family did their research, and ultimately decided to schedule the open heart surgery with a surgeon in San Diego, where they had family who could help support them. It was scheduled for September 13, 2023.
The month before was a rough one for the family. Not only was the impending surgery approaching quickly, but Travis’ dog Daisy passed away unexpectedly from a defect she was born with. Daisy was a German Shorthair Pointer who was only two years old. As if that wasn’t enough, Neva found out she needed sinus surgery that month. “I was going to postpone it for after Travis’ surgery,” she recalled. “But then as a parent I thought to myself, you know what I am going to do this so my kid knows it’s ok to get surgery and to trust the doctors. They’re going to take care of you.”
With Neva’s surgery successful and the long month of August behind them, the Dengler family traveled to San Diego on Sunday, September 9th in preparation for the Wednesday surgery. Before leaving, staff, and students at Sonoran Heights made cards and posters for Travis, even designating his surgery day to wear red in support of Travis.
In San Diego the family stayed in the Ronald McDonald house on the hospital campus, which provided them some support and relief. The first couple days were full of tests, blood work, vital checks, and preparations. On the day of surgery, the family was up and ready to go at 5:30 a.m. Neva remembers that hard morning as Travis’ fears became real and he didn’t want to go. After some conversations and tears, they were able to get Travis to the hospital.
Before the procedure the surgeon explained to Neva and her husband that they should hear from him about 1:00 p.m. and then they would be able to see Travis about an hour after that. “It’s like the longest time ever,” Neva remembers. But when 1:00 p.m. came around, the worry started to settle in. There was no call, nothing from the surgeon. 1:30 p.m. came around and the family was watching the clock intensely, checking the digital screen in the waiting room. It still said Travis was in surgery.
“It’s 2:15 p.m., and now we’re really stressing out,” she says. “3:00 p.m. comes around, and he is still in the operating room, and the staff really can’t help other than to say he’s still in surgery.”
Finally, shortly after 3:00 p.m. they received a call, nearly two hours after the intended completion time, to say they were done. The doctors told them it was successful and they could see Travis in recovery.
“We get up to the room and we see him, and all these emotions just run out,” Neva remembers. “He looked swollen, he had tubes everywhere. Wires hooked up. We just lost it, tears like crazy.”
The process for the surgery requires the doctor to put Travis on bypass. After the surgery to fix the mitral valve and hole in the heart, they took Travis off bypass and tested his body. The surgeon wasn’t satisfied, and placed him back on bypass to perform some additional measures. He was then taken off bypass and tested again. That was the reason for the delay.
“One side of his heart was so enlarged because his body was working really, really hard,” Neva shared. “Right after surgery the surgeon said his heart had already gone back to normal size.”
Despite the surgery being over, the next four days were rough for the family. The doctors wanted Travis to get out of bed the next day, and were really pushing him to start the recovery process. He had to meet certain benchmarks before he could be released.
But Travis was sick, nauseous, and tired. He kept asking his Dad where the elevator was because he wanted to get out of there. Neva and her husband took shifts being in the hospital with him for those initial days as he worked to gain strength, keep food down, and recover as best he could. Once he was finally released from the hospital, they had to stay on campus for another week to monitor the heart and make sure everything was operating properly. It was a total of two long and exhausting weeks in San Diego for the Dengler family, before they set out for the long trip home to Surprise.
The recovery didn’t stop there though. After four months, he’s just now getting back to normal.
“It’s been a hard physical recovery, but also mental,” Neva said. “He was afraid to throw a ball or ride his bike.”
When Travis came home he had trouble sleeping and couldn’t lift anything heavier than a gallon of milk for two months. The school made accommodations for him when he came back after six weeks, helping out with a variety of things, including his backpack. But Travis wasn’t having any of that. He said he was going to do it, and he did.
He came to Nurse Kelly with some questions about his conditions, asking whether he would be able to do all the things he did beforehand.
“You’re probably going to be able to do them better,” Kelly exclaimed. “Because you didn’t realize that you weren’t doing them to the fullest before!”
“He may not be at the same physical activity level as some of the other male students right now, but he’ll get there,” Neva said. “Prior to surgery he would always be short-winded, and he couldn’t keep up. And now it all makes sense. When my husband and I look at his childhood, things kind of fall into place. But what was unfortunate, was that it was never diagnosed by any of his pediatricians. No one caught wind of this until he actually had an EKG and echo with the Anthony Bates Foundation.”
According to Sharon Bates, in countries like Japan and Italy children are screened multiple times in their youth for healthy hearts. They have to have a certifiably healthy heart to participate in sports. The Olympics and other professional sports also have requirements for health screenings. “We don’t know what we don’t know,” she proclaims. “Now that I know all that I know about the heart, why aren’t we doing this for our kids?”
Both Sharon and Kelly reiterated to Neva after all of this just how fortunate she was.
The Dengler family found out early, they had time to research, plan, educate themselves, and make difficult decisions.
“I’m glad that they found out at a time that it wasn’t a critical situation,” said Kelly. “As alarming and as shocking as that was, you found out at the most perfect time. He was healthy, it was just a screening event, not during an activity or during a baseball game.
“As scary as Travis’ story was for that family, he’s here,” Sharon said. “He’s healthy. He’s a part of that family. There’s no empty chair. That’s why I do what I do. I am so blessed to be able to work on my addiction of saving lives.”
Travis still sees his cardiologist on a regular basis, but he shouldn’t need any more surgeries. The family got hit hard, as Neva describes it, but they were able to come out stronger on the other side and are now able to share their experiences with others and hopefully make changes just like Sharon in support of heart health.
“I feel like she did a very good job being a strong mom, but also vulnerable at the same time,” Kelly said. “I feel like she was very good about allowing Travis to share his fears and supporting them.”
Many schools these days still aren’t equipped with AEDs. They weren’t required when built, and children aren’t the first age group people think of when talking about heart conditions. Communities are now just starting to see the impact and importance of them on a school campus. The Dysart Unified School District just this year went out of their way to purchase AED devices for all the campuses that don’t currently have one, understanding their overall importance as part of creating a safe environment.
“They are so well designed today,” said Kelly Davidson. “They walk you through how to do it. The pictures are very simple. It’s easier to use an AED in my opinion as a healthcare provider, than it is to perform CPR.”
Neva echoes that sentiment, and couldn’t be happier about where her children go to school. But that’s not enough for her. She wants every parent to take a more active role in their child’s education and school community.
“Be involved in your kids’ school,” Neva urges others. “Get to know the teachers and staff. I feel comfortable that my kids go to Sonoran Heights Middle School. Nurse Kelly knows my kids history. They have an AED. My kids are in good hands here. There’s amazing people that work here. I feel like they’re almost my other family. If I hadn’t joined the PTA, I probably would have not attended the Anthony Bates Foundation screening and would have never known about Travis’ heart condition. Seeking out new experiences has truly saved the life of my son.”
The fourth week after surgery Neva and her husband took Travis, a huge baseball fan and player, to an Arizona Diamondbacks game. They had to call ahead and get special accommodations at the stadium, because they were not sure if he would get through crowds. Travis did get nauseous a bit, but he made it through it. The Diamondbacks lost by one to the Houston Astros that day, but that didn’t seem to bother Travis very much. It was a step in the right direction, back to normalcy, back to the things Travis loves and lives for.
“To know that Travis is healthy, he’s doing everything that he used to and more, it’s pretty much a miracle,” Neva exclaimed. “Hopefully going forward this whole story helps other kids and their families. It pretty much saved his life.”
