Tetralogy of Fallot Patient and his Family Give Back

What was supposed to be a routine visit with their pediatrician on a seemingly typical Friday morning changed Stephanie Harding and her son Trent’s life forever when their day ended with a diagnosis of Tetralogy of Fallot.

As the pediatrician wrapped up his checkup that morning, he noticed 5-week old Trent’s forehead appeared somewhat purple. He tested his oxygen saturation to find the baby’s oxygen level was low and would need to be seen by a cardiologist immediately for further examination.

A few hours later, the cardiologist determined that Trent had Tetralogy of Fallot, a heart condition made up of four related congenital defects that occur due to abnormal development of the fetal heart. Those three words were as foreign and shocking to Stephanie as the turn of events that day.

“I remember thinking we had only packed enough food and supplies for the baby for a trip to the pediatrician and back. Here we were now, at a hospital, hearing the cardiologist explain what his condition involved and everything else went blank. All I could hear is that Trent had four heart defects that needed to be repaired immediately,” Stephanie says. “We asked for prayer right away; we were in disbelief.”

A few days later, Trent had open heart surgery at Loma Linda University Children’s Hospital to repair the four heart defects.

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Trent recovering after his first surgery, just days after being diagnosed with Tetralogy of Fallot.

“He’s our miracle baby,” Stephanie says. “It’s a miracle that we caught his condition in time. There had been no signs or symptoms before that appointment with his pediatrician.”

In 2017, Trent, then 6 years old, underwent a second surgery, as is typical for a child with Tetralogy of Fallot, to replace the pulmonary valve with Dr. Richard Gates, a pediatric cardiothoracic surgeon and co-medical director of the CHOC Children’s Heart Institute. Stephanie and her husband, Tim, remember having to explain as best they could to their little boy what was about to happen to him once again.

“Trent is quiet and goes with the flow, yet I didn’t know how he would take it. He was so brave through it all,” Stephanie says. “I still remember as he was being wheeled into the operating room and I finally had to let go of his hand so he could go in; he looked up from the gurney and looked at me, with the anesthesia just starting to kick in, and I thought he was surely going to start crying or screaming. Instead, he just gave me this confident look like, ‘I’ve got this Mom, it’s going to be OK,’” an emotional Stephanie recalls.

The surgery was successful, and the Hardings couldn’t be more thankful with the remarkable care and compassion Trent received from CHOC staff, many of whom they keep in touch with today.

Stephanie and Trent occasionally stop by the cardiovascular intensive care unit (CVICU) at CHOC to say hello to the nurses and doctors who took care of them, and drop off gifts for other families going through what they’ve experienced. Stephanie had provided goodies to the hospital, including the CVICU, long before her son was treated at CHOC. Now, giving back to the CVICU means more than ever.

“It feels great to let another parent know they’re not alone, and that there are resources and groups out there that will support them,” Stephanie says.

Trent, now 7, puts it simply. It makes him so happy, he says, to be able to give back to other kids like him.

harding-family-Tetralogy-of-Fallot

The Harding family’s passion to help others doesn’t stop at CHOC. They are very active locally, raising awareness and funds for the congenital heart defect (CHD) community, through groups like Hopeful Hearts Foundation, an organization for families with children affected by CHD.

On Feb.  23, the Hardings are hosting a fundraiser at GritCycle, an indoor cycling gym, with the proceeds benefitting CHOC. Participants can buy a ticket to cycle at the Monarch Beach location.

Trent will need another surgery to replace his pulmonary valve in about five years. For now, he is an active first-grader who enjoys math and jiu-jitsu. He also loves hanging out with his family, including his brothers, Stephan and Dylan, who are very supportive of their ‘miracle baby.’

Learn more about the Heart Institute at CHOC Children's

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Innovation Comes Home

Five-year-old Emma has hypoplastic left heart syndrome (HLHS) and has undergone three open-heart surgeries since first coming to CHOC Children’s― the only Orange County hospital providing pediatric open-heart surgery― at just 2 days old. After the last surgery, she went home with an advanced, wireless monitoring device provided by the CHOC Cardiopulmonary Health Intelligence Program (CHiP). This lightweight tablet monitors Emma’s blood pressure and other vital signs, instantly transmitting the data to her care team at CHOC who can incorporate it into her electronic medical record as needed. The tablet also offers her parents extra peace of mind and direct access to Emma’s team of specialists at CHOC.

Emma and her family have participated in CHOC Walk in the Park to give back to the hospital that has cared for her since birth.

Videoconferencing for “virtual visits” mean CHOC doctors, nurses and other members of her care team are always close by. It’s part of a larger pilot program that integrates several emerging health technologies to provide even more highly personalized care.

HLHS is a type of heart defect that occurs when the left side of the heart does not form properly during pregnancy. In patients with hypoplastic left heart syndrome, most of the structures on the left side of the heart are small and underdeveloped. The degree of underdevelopment differs from child to child. Perhaps the most critical defect in HLHS is the small, underdeveloped left ventricle. This chamber is normally very strong and muscular so it can pump blood to the body. When the chamber is small and poorly developed, it will not function effectively and can’t provide enough blood flow to meet the body’s needs. For this reason, an infant with HLHS will not live long without surgical intervention.

Mid-way through taking a walk in the CVICU, Emma takes a break to dance with surprise visitor Mickey Mouse.

Babies born with this condition must begin the first of three open-heart surgical procedures within days of birth. Emma underwent her first surgery when she was 6 days old and had her third surgery almost four years later. After each surgery, her parents Patrice and Kevin saw noticeable improvement in her energy, mobility and quality of life.

During one stay in CHOC’s cardiovascular intensive care unit (CVICU), Emma and her family dressed up as superheroes and paraded throughout the unit.

But children like Emma need frequent office visits to monitor heart function, medication and symptoms. Over the past five years, her parents have made countless trips to CHOC, sometimes as often as every day. At home, they’ve meticulously tracked their daughter’s medications, blood pressure and overall health with pen and paper.

That changed last year thanks to a five-year CHOC pilot program designed to provide more personalized treatment for kids with heart failure. Emma’s parents now check her vital signs instantly at home with the same clinical accuracy as an office visit. With the Integrated Medical Tablet provided by the CHOC Cardiopulmonary Health Intelligence Program (CHiP), Emma’s doctors, nurses and care team are only a touch screen away.

home monitoring for choc childrens patient
Thanks to a five-year CHOC pilot program designed to provide more personalized treatment for kids with heart failure, Emma’s parents now check her vital signs instantly at home with the same clinical accuracy as an office visit.

“After her last open-heart surgery, Emma was still healing at home when we began testing out this machine,” Patrice said. “It gave us such peace of mind as we were still closely looking at her oxygen saturation and blood pressure. We didn’t have to go into the office every day to get this information—it could be recorded and sent to her specialists from the comfort of our own home.”

Instant Communication 

Surgery may be behind her, but Emma continues taking medications that require constant monitoring and adjustment. The tablet has built-in alerts to notify her doctor if the results are outside the range of the personal limits that have been set for her.

And if something doesn’t look quite right, Patrice and Kevin don’t have to drive Emma over to CHOC. They can take photos and videos with the tablet and send them directly to Emma’s care team.

Although Emma and her family love visiting with her care team, they are happy this at-home monitoring has resulted in less frequent trips to CHOC.

“Emma is on a diuretic for her heart condition, so being able to show her doctors if she is swollen or puffy is helpful,” Patrice said. “We are also able to type up our notes and questions for her doctors.”

Videoconferencing capabilities allow “virtual visits,” including wellness checks and parent education, at any time with the CHOC cardiopulmonary team. Beginning in 2018, CHiP will expand services to patients with other types of heart conditions.

“Patients and families feel much more comfortable outside of the clinical setting, but when they’re not in the hospital, they feel very nervous about the health of their child. They have much more peace of mind knowing that their child has quick access to CHOC from home,” explains Dr. Anthony Chang, CHOC’s Chief Intelligence and Innovation Officer, “We’re proud to offer a clinical environment to test and evaluate new technologies such as artificial intelligence and remote monitoring solutions.”

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Dr. Anthony Chang, Emma’s pediatric cardiologist, and CHOC’s chief intelligence and innovation officer

Far More Than a “Fancy Gadget”

Remote monitoring, video conferencing and wireless access to a patient’s electronic medical record are exciting advancements in care for children with heart failure. In this pilot study, however, CHOC is exploring the additional benefits that may come from leveraging these capabilities with other emerging health technology.

One of those technologies is precision medicine, a treatment approach that incorporates the patient’s genetics, environment and lifestyle. Another is pharmacogenomics, which evaluates how genetics may impact a patient’s individual response to a particular medication.

As a pediatric cardiologist within the CHOC Children’s Heart Institute, Dr. Chang is interested in how these technologies, combined with data analytics and artificial intelligence, may further personalize treatment and improve outcomes.

“Our goal is to use all available technologies and provide the most advanced, innovative care that is best suited for the individual patient,” Dr. Chang said. “CHOC is taking a national role among children’s hospitals to develop a model that may ultimately be used by other pediatric specialties for better management of complex patients.”

Learn more about the Heart Institute at CHOC Children's

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Heart Month: Ryden’s Story

At 27 weeks pregnant, Kayleen Enoka discovered her baby boy, Ryden, had hypoplastic left heart syndrome (HLHS), a birth defect where the left side of the heart does not form correctly and affects normal blood flow through the heart. As a young, first-time mom, she was overwhelmed by the news.

“I felt incredibly helpless. I felt that I couldn’t do anything to help my baby and I wondered what would happen to him. I also felt that I must have done something wrong during the pregnancy to cause his heart defect. I was reassured by the perinatologist and the cardiologist that his defect wasn’t because of something I had done wrong. My mother sat with me through the diagnosis and held my hand and hugged me as I cried,” Kayleen vividly remembers.

After Ryden was born, he was immediately transferred to CHOC Children’s Hospital to be cared for by our CHOC Heart Institute. Kayleen was a partner in her son’s care from the beginning. He had to undergo a series of three surgeries, performed by Dr. Richard Gates, pediatric cardiothoracic surgeon at CHOC, with the first one, the Norwood Procedure, at just five days old. During the surgery, Dr. Gates made Ryden’s right ventricle the main pumping chamber for blood flow to his body.  A shunt was also placed as a pathway for blood to flow into his lungs to receive oxygen.

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Ryden was transferred to CHOC shortly after he was born for the first of three heart surgeries.

“My family and I all sat together waiting for news during the surgery. It was hard, but having so much support helped a lot. I remember when we walked into the room and everyone seemed to be moving so fast. When I asked how he was doing, I was told he was tenuous. That word has resonated with me over the years because I remember feeling that he wouldn’t survive the night. The doctors showed me where the bypass machine was and told me that it was there in case he needed it; again, I was frightened for my baby wondering if he would be strong enough to get through this. I believed in my heart that he was a fighter, but watching all the activity and how small he looked in his hospital bed, made it much harder to believe,” Kayleen says.

Ryden’s second surgery, the Glenn Shunt Procedure, performed when he was 6 months old, was just as scary because Ryden’s health was fragile, Kayleen recalls. The procedure created a direct connection between the pulmonary artery and the vessel returning oxygen-poor blood from the upper part of the body to the heart. After the surgery, Ryden had numerous complications and was hospitalized for 34 days.

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Ryden at about 6 months of age following his second heart surgery, the Glenn Shunt Procedure.

By the time of Ryden’s third surgery, the Fontan when he was 4 years old, Kayleen was ready but apprehensive. “Since Ryden was a little older, I could be honest with him. I told him what was going to happen, and even though he was scared, he was aware and was still able to smile,” Kayleen says.

Dr. Gates connected Ryden’s pulmonary artery and the vessel returning oxygen-poor blood from the lower part of the body to the heart, which allowed the rest of the blood coming back from the body to go to the lungs.  Ryden spent ten days in the hospital.

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After Ryden’s third heart surgery, his nurses gave him this heart pillow, signed by his care team.

Throughout the years, Ryden has experienced arrhythmias, is susceptible to colds, takes multiple medications, and was recently diagnosed with asthma. Kayleen has developed a close relationship with the CHOC Heart Institute team.

“I have always felt like I am a part of the team. In the beginning, I could never have too many questions; the doctors and nurses always took the time to make sure I understood what was happening. Now, when Ryden needs to be hospitalized, the care team always listens to my input. We work together because they understand that I know my son best,” she says.

Among the many experts involved in Ryden’s care, the Enokas have a special relationship with Dr. Anthony Chang, pediatric cardiologist at CHOC.

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Ryden and his cardiologist, Dr. Anthony Chang.

“Dr. Chang has been amazing. I wouldn’t have chosen another cardiologist because he takes the time to care for his patients. Ryden really admires him and often says when he grows up he wants to work on hearts like him,” Kayleen says.

“Ever since I took care of a baby with HLHS in 1983, my passion to help children with congenital heart disease has never subsided. HLHS is a heart defect that requires the supreme dedication of both doctors and nurses in cardiology and cardiac surgery as well as intensive care. It is, however, parents like Kayleen who continue to inspire all of us to help these children, and humbles us in all that they do when these children are not in the hospital or clinic,” Dr. Chang says.

Kayleen’s appreciation for CHOC and its mission inspired her to become an employee. She works as a department assistant in the clinical education and professional development department. She also volunteers her time as a member of the Family Advisory Council, an important group of patients’ family members who provide input on decisions, initiatives and discussions at CHOC. In addition, Kayleen participates in the CHOC Walk every year with “Team Ryden,” including friends, family and cardiovascular intensive care unit (CVICU) nurses.

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Ryden inspires a group of family and friends to participate in CHOC Walk every year in his honor.

Today, Ryden is a happy, fun-loving 7-year-old, who enjoys swimming and playing baseball. Throughout his journey, one thing that has remained unwavering, is Kayleen and Ryden’s close relationship. When Ryden has questions about his heart, Kayleen is always happy to talk openly and lovingly with her son, and reminds him that he has a “special heart.” His middle name — Pu’uwaikila — means “heart of steel,” and Kayleen’s little fighter is surely living up to the name.

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Kayleen Enoka and her son Ryden.

As American Heart Month comes to a close, Kayleen offers parents of heart patients the following tried and true tips that have helped her along the way:

1. Trust your child to know his limits. I’ve always let Ryden push himself, while still keeping a close eye on him of course.

  1. When your child is developmetally ready, be open and honest about his condition. You might be worried you’ll scare him/her, but I’ve always felt that Ryden has the right to know what’s happening to him.
  2. Children with congenital heart diseases may have self-esteem issues (i.e. scars, lack of ability to keep up with other children.) Remember to let your child know that he/she is special and what makes them different is also what makes them amazing. I always tell Ryden that his scar on his chest is what shows his strength. And, that chicks dig scars – it’s an inside joke (he’s never allowed to date).



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CHOC Heart Surgery Patient Joins Security Team

As the only hospital in Orange County to perform open heart surgery on babies and children, CHOC Children’s and its Heart Institute team form special bonds with the patients entrusted to their care.

Many CHOC patients come back to visit and say thank you, some send holiday cards and share school photos so their care teams can see them grow up. A few even return to CHOC as employees, eager to be part of the organization that saved their lives.

Daniel Davis was just 13 years old when Dr. Richard Gates, surgeon-in-chief at CHOC and co-medical director of the Heart Institute, performed surgery on his heart. Eight years later Daniel returned to CHOC as a security officer, helping establish a calm and safe environment at the hospital that cared for him as a teen. He has biannual checkups with Dr. Anthony Chang, pediatric cardiologist at CHOC.

Daniel was born with a subaortic membrane, meaning that his heart had tissue growth below the aortic valve. This caused partial blood flow blockage from the left ventricle, which pumps blood to the rest of the body. This put stress on Daniel’s heart, and if left untreated, could have caused heart failure.  He had already gone through his first open- heart surgery at just three days old.

“I grew up in Orange County and wanted to return to CHOC for work because it’s so close to my heart,” he says. “Growing up I wanted to pursue a career in the military, so a security position was a first step, but now I’m pursuing my EMT certification and eventually a career in nursing.”

Daniel loves working in The Julia and George Argyros Emergency Department and observing the environment.

“I’m constantly impressed by the speed and efficiency of the emergency department staff, how they work at such a high level at such a great speed,” he says. “The emergency department is filled with the unexpected and it keeps you on your toes. Since the ED is so fast-paced, you have to be ready for anything.”

Part of Daniel’s job involves escorting patients and families on campus, as well as to and from the Orange County Ronald McDonald House. On more than one occasion, he’s been able to calm a flustered parent by sharing his story. Seeing an example of the great care CHOC provides is comforting to parents in what can be an otherwise stressful time, he has learned.

When not protecting the hallways of CHOC, he participates in Spartan races, an ultra-competitive obstacle course.

choc heart surgery
When not working at CHOC, Daniel competes in Spartan Races, an ultra-competitive obstacle course. He’s never let his heart condition or past surgeries keep him from completing his goals.

“I never used my heart condition as an excuse to get out of things like physical education class growing up,” he says. “I love being active whenever possible, and encouraging my friends and colleagues in their physical fitness goals as well.”

His commitment to fitness goals does not go unnoticed by his security teammates.

“The obstacle courses Daniel competes in require your body to be pushed to a whole new level,” says Steven Barreda, security services supervisor at CHOC. “Daniel and I work evenings, and on more than one occasion, we’ve worked overtime until 2:00 a.m. and even after a 12 -hour shift, he goes to the gym to train for his next race.”

For Daniel’s surgeons, seeing a former patient grow up to live a normal, healthy life is a joy. Being able to call him a colleague is even better.

“Daniel is fortunate to have a surgically curable condition that when treated properly and timely should allow him a completely healthy and long life, and it’s great that he leads such an athletic lifestyle,” Dr. Gates says. “We have a few patients and parents of patients who work at CHOC. It’s always great and inspiring to hear stories of how they are doing and getting along.”

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By the Numbers: CHOC Children’s Heart Institute

The CHOC Children’s Heart Institute offers state-of-the-art diagnosis and treatment for an entire spectrum of cardiac conditions, and we are the only Orange County facility to perform neonatal and pediatric open-heart surgery and cardiac catheterization.

In honor of American Heart Month, learn more about the institute.

heart institute

Related posts:

  • Tetralogy of Fallot Patient and his Family Give Back
    What was supposed to be a routine visit with their pediatrician on a seemingly typical Friday morning changed Stephanie Harding and her son Trent’s life forever.
  • Catching a Heart Defect in Utero: Marco’s Story
    Meagan and Dante Cipulli quickly settled on a name when they discovered their third baby would be a boy: Marco, which means God of War.That name would become especially fitting ...
  • Innovation Comes Home
    With the Integrated Medical Tablet provided by the CHOC Cardiopulmonary Health Intelligence Program (CHiP), Emma’s doctors, nurses and care team are only a touch screen away.