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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A Reunion of Heroes: Katie’s Story

After recently being discharged, Katie Flathom stopped by the CHOC Children’s cardiovascular intensive care unit (CVICU) again to make some introductions.

Suddenly, the 16-year-old has a group of heroes in her life: the coach who resuscitated her on school campus and the CHOC team that treated Katie for three weeks and will continue her care as she navigates life with a newly diagnosed heart condition.

During a recent athletic conditioning class in school, Katie collapsed and went into sudden cardiac arrest.

Her trained and quick-thinking conditioning coach snapped into action and resuscitated Katie with CPR until paramedics could arrive and transport her to CHOC.

“It was the longest 10 minutes of my life,” said Greg Vandermade, Katie’s coach at Mater Dei High School who also credits other students for alerting him to Katie’s condition and calling 911, as well as fellow staff who assisted by obtaining an automated external defibrillator (AED) to shock Katie’s heart into a normal rhythm.

At CHOC, Katie continued to have irregular heartbeats that required further defibrillation and cardioversion, procedures that help restore the heart’s natural heart rhythm, said Dr. Anthony McCanta, a CHOC cardiologist.

Katie also went on extracorporeal life support, a treatment that takes over the heart’s pumping function and the lungs’ oxygen exchange until a patient can recover from injury. This allowed the CHOC Children’s Heart Institute team to continue to treat her life-threatening arrhythmias with medication, Dr. McCanta said.

Dr. McCanta performed an electrophysiology study procedure and implanted beneath Katie’s skin a subcutaneous implantable cardioverter defibrillator, a device that helps prevent sudden cardiac arrest in patients.

After Katie’s discharge and further testing, she was diagnosed with Arrhythmogenic Right Ventricular Dysplasia, or ARVD.  A rare type of cardiomyopathy  where the muscle tissue in the heart’s right ventricle is infiltrated and replaced by fatty tissue and scar tissue, ARVD weakens the heart’s ability to pump blood and makes the heart susceptible to life-threatening arrhythmias.

The diagnosis also means Katie, a cross country and track athlete, will need to give up running for good.

“It was hard at first,” she said.

But instead of sitting on the sidelines, Katie’s decided to pick up golf, a sport that’s compatible with ARVD.

Katie has even begun incorporating a golf swing into her physical therapy sessions at CHOC, and she had two clubs in tow as she, her family and coach Greg visited the CVICU recently.

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When Katie came back to visit the CVICU team and reunite her heroes, her CHOC care team presented her with a heart-shaped pillow, which they all signed with well wishes.

There, Dr. McCanta and the CHOC team presented Greg with a plaque recognizing him for his swift response and efforts that surely saved Katie’s life.

“Coach Greg responded to Katie with CPR on the spot and saved her life that day,” Dr. McCanta said. “His heroic actions, and those of Katie’s schoolmates and staff, including obtaining and appropriately using the AED, are the reason that Katie is alive today.”

Katie’s story underscores the importance of being trained in CPR and in the use of AEDs, Dr. McCanta said.

“Having AEDs in schools and training staff and students in CPR with an AED are some of the most important interventions that we have in saving lives of young people experiencing sudden cardiac arrest,” he said.

Getting AEDs installed in schools is among the goals of CHOC’s Life-Threatening Events Associated with Pediatric Sports – or LEAPS – program.

Coincidentally, Katie’s own grandmother, a nurse and health services coordinator in the Irvine Unified School District, has collaborated with LEAPS and helped get AEDs installed on her district’s campuses.

“Never did I think though that this would happen to one of my own family members,” said Marcia, Katie’s grandmother.

Learn more about pacemakers and cardioverter defibriilators

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  • Tetralogy of Fallot Patient and his Family Give Back
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  • 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 ...
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Medical Emergency Disrupts Family’s Holiday Plans

For most American families, the Fourth of July ignites thoughts of fireworks, barbecues and outdoor fun with friends and neighbors. For the Thompsons, the summer holiday sparks memories of nurses, doctors and the intensive care unit.

It was July 3. The Thompson family, Eric, Kristen and their two young daughters Kaylee and Sarah, were getting ready to celebrate Independence Day in their close-knit Los Alamitos community. Eight-year-old Sarah was feeling a little under the weather, but was just as eager as the rest of her family for the festivities to begin.

Without warning, party preparations were interrupted by a horrific scream. Kristen raced to find her youngest seizing on the floor. She called 911, and the ambulance brought Sarah to the nearest emergency department. There, Sarah’s high heart rate led doctors to believe she had an arrhythmia. They decided to transport the young patient to CHOC Children’s Hospital.

Shortly after arriving at CHOC, Sarah’s health dramatically declined. Her heart stopped. The cardiovascular intensive care unit (CVICU) team took turns performing CPR with high quality compressions on Sarah for 95 minutes, while another specialized team placed her on ECMO (extracorporeal membrane oxygenation), state-of-the-art technology that supports the heart and lungs by taking over the heart’s pumping function and the lung’s oxygen exchange.

The platinum-level Extracorporeal Life Support Organization (ELSO) Award of Excellence in Life Support recognizes programs worldwide that distinguish themselves by having evidence-based processes, procedures and systems in place that promote excellence in ECLS. As a recipient of a platinum designation, CHOC is among the highest scoring institutions.

Eric and Kristen watched as 15-20 physicians, nurses and respiratory care therapists worked on their daughter; those performing CPR would rotate after a couple of minutes at the direction of critical care specialist Dr. Francis Kim. After she was placed on ECMO, Sarah was taken to the cardiac catheterization lab, where she was diagnosed with myocarditis. Inflammation of the middle layer of the heart wall, myocarditis can affect both the heart’s muscle cells and its electrical system. It’s usually caused by a viral infection and if severe, can weaken the heart’s pumping action. Sarah’s family was in disbelief.

ecmo
Sarah was placed on ECMO for five days. ECMO (extracorporeal membrane oxygenation) is a state-of-the-art technology that supports the heart and lungs by taking over the heart’s pumping function and the lung’s oxygen exchange.

 

“Sarah seemed to have just a mild cold, and nothing that would have prevented her from enjoying our holiday plans. It was surreal seeing her in the ICU, hooked up to all of the equipment and surrounded by so many specialists,” recalls Kristen.

CHOC kept Sarah on ECMO for five days. Her family and friends waited around the clock, hoping the feisty girl they loved would come out of the traumatic ordeal okay. Hospital staff offered encouraging words, telling Sarah’s loved ones that she was clearly a fighter. And, a scan of her brain looked good, though a complete neurological evaluation couldn’t be completed until she was awake.

Kristen got the first glimmer of hope when, after her daughter’s breathing tube was removed, Sarah said, “I want to go home.”  Soon, Sarah started to get bossy with her family members – a sign she was on the mend. Even better, her heart recovered and she suffered no neurological injuries.

Dr. Kim, the primary physician overseeing Sarah’s care, credits the skill and expertise of CHOC’s CVICU staff for her outcome — acknowledgement shared by the Thompson family. “We have an incredible, high-functioning team with vast experience in caring for the most critically-ill children. In Sarah’s case, it took skilled teamwork to put her on ECMO while performing CPR,” explains Dr. Kim. “There’s no room for error. We are thrilled she’s doing so well and has returned to pursuing all of her favorite activities.”

ecmo
Sarah has returned to all of her favorite activities, including taking dance class.

A straight A student, Sarah loves to read. Her dog and sister rank high on her list of favorites. She also takes jazz and hip hop classes, and plays soccer. And, she still looks forward to holiday celebrations with friends and family.

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.

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.

Why One Mom Is Thankful for CHOC This Year

By Karen Stapleton, CHOC parent and mom of Noah

Happy Thanksgiving! My name is Karen Stapleton, and my son Noah is a patient at CHOC Children’s. As I prepare to celebrate the holidays with my family, I’m grateful we can be together since we have so much to celebrate. I’m also grateful for Noah’s many doctors and nurses at CHOC because without them, my son wouldn’t be alive.

Noah’s birth story

When I was 29 weeks pregnant with Noah, we learned that he had Down syndrome. Another prenatal ultrasound showed an abnormality in his heart, and we were referred to Dr. Pierangelo Renella, a pediatric cardiologist at CHOC, who diagnosed Noah with tetralogy of fallot, a serious heart defect that causes poor oxygenated blood flow from the heart to the rest of the body. I was scared, but having been a CHOC patient myself as a child, I knew my son would be in good hands.

Karen and Noah in the NICU, shortly after Noah was born
Karen and Noah in the NICU, shortly after Noah was born

On July 27 of last year our lives changed forever— Noah was born! I chose to deliver at St. Joseph Hospital in Orange so that my son could be as close to CHOC as possible. When he was born, there were so many doctors and nurses around. I saw Noah quickly enough to give him a kiss before he was whisked away to the Neonatal Intensive Care Unit (NICU) at CHOC.

Shortly after birth, Noah’s care team also diagnosed him with Apert syndrome, a genetic disorder that causes certain bones to fuse early. For Noah, that was his skull, fingers and toes.

 

A series of surgeries begins at 3 days old

Noah’s first surgery happened just three days after he was born. Due to the complexity of Noah’s conditions, the surgery was a team effort from multiple CHOC specialties. Noah’s gastroenterologist Dr. Jeffrey Ho; his team of cardiologists Dr. Renella, Dr. Michael Recto, Dr. Anthony McCanta, and Dr. Gira Morchi; his pulmonologist Dr. Amy Harrison; his otolaryngologist Dr. Felizardo Camilon; and the entire NICU team came together to prepare him and get him through that surgery.

It was a success, and 31 days after he was born, Noah finally came home! Weekly trips back to CHOC’s clinics included visits to gastroenterology, pulmonary, cardiology and craniofacial specialists. It was another team effort to prepare Noah for a second open heart surgery that he would eventually need.

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Noah and his cardiothoracic surgeon, Dr. Richard Gates

But a few weeks later, Noah had respiratory complications, which lead to an emergency open heart surgery at just 2 ½ months old. Thanks to Noah’s cardiothoracic surgeon, Dr. Richard Gates, and Noah’s fighting spirit, he was able to come home shortly after surgery.

Celebrating Christmas at CHOC

Just days before Christmas last year, Noah had to be admitted to CHOC for respiratory failure. It was scary to see my baby sedated for 19 days. Dr. Juliette Hunt, a critical care specialist, recommended that Noah undergo a tracheostomy, where a small opening is made in his windpipe and a tube is inserted to help him breathe. Making a decision like that is hard and scary for a mom, but I had complete trust in Noah’s team, and if they knew it would help Noah breathe easier, then I knew it was the right thing to do.

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Noah celebrated his first Christmas at CHOC

After that, Noah started to thrive. He gained weight and became strong enough for his next open heart surgery with Dr. Gates. After a mere six days in the Cardiovascular Intensive Care Unit following this surgery, Noah got to come home again!

Even when Noah is doing well, sometimes it can be scary to care for him when he’s at home. During one of our hospital stays, I confided this fear in one of Noah’s favorite nurses, Karissa. She gave me specific tips on what to do during his tummy time and baths, and gave me the courage to care for my son. She encouraged me, and reminded me that CHOC wouldn’t advise me to do anything that wasn’t safe.

Noah and Karissa, a registered nurse at CHOC

Noah’s first birthday

All of this is a lot for a little baby to go through before his first birthday, but Noah has always surprised us and pulled through. Celebrating his first birthday meant more than celebrating his first year of life; it meant celebrating every fight Noah had won over the last year, and it meant appreciating a milestone that at times we thought we might never reach. We decided a super hero theme was perfect for his party because we think of Noah as our little super hero.

Noah celebrating his first birthday

After his birthday, Noah continued to flourish and grow! He started rolling over and actively playing, and he has not stopped smiling.

This progress allowed us to prepare for his next major surgery, a frontal orbital advancement, to reshape his skull and forehead that has fused too early due to Apert syndrome.

Before surgery could begin, the doctors needed to cut Noah’s hair to make a safe incision in his skull. We marked another one of Noah’s milestones at CHOC— his first haircut!

Noah received his very first haircut at CHOC from his neurosurgeon Dr. Michael Muhonen, prior to a skull surgery.
Noah’s very first haircut happened at CHOC. He received it from his neurosurgeon Dr. Michael Muhonen, prior to skull surgery.

With the expertise of his neurosurgeon Dr. Michael Muhonen and his plastic surgeon Dr. Raj Vyas, and a very short stay in the Pediatric Intensive Care Unit, Noah came home again! After yet another successful surgery at CHOC, his brain can now continue to grow.

Noah has more hurdles and additional surgeries ahead of him, but even with how much he’s fought, he continues to smile. He’s not cranky and he doesn’t cry. He’s enjoying every single day he gets to be here – and that’s the life he has taught me to live too.

If Noah’s care team ever needs a reminder of why they do what you do, I tell them: My son would not be here today if it were not for each and every one of them here at CHOC. And for that, my family will be forever grateful.

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