CHOC Children’s Volunteer Forms Friendship with Patient

After retiring from a storied career in corporate communications and marketing, Fran was looking to give back in her community. Having spent much of her adult life in Orange County, she was aware of the impact CHOC Children’s has had on the place she has called home for decades.

“When I was exploring volunteer opportunities at CHOC, I knew that I wanted a position where I could engage with patients,” Fran recalls. “When volunteer services described all that the Family Resource Center offers to patients and families, I knew it was the perfect place for me.”

Today, Fran staffs the Family Resource Center (FRC) located on the second floor of the Bill Holmes Tower. The FRC is a space where patients and families can read books and choose one to take home, rent movies, play games, utilize a computer lab, research their child’s diagnosis with medical and developmental literature, and decompress with arts and crafts.

Through her weekly shifts and as host of the FRC’s weekly Story Time, which is broadcast to all patient rooms within CHOC’s Orange campus, Fran has formed a special bond with 12-year-old patient Evelyn, who has been a CHOC Children’s patient for nearly her entire life.

Before she was born, Evelyn was diagnosed with complex congenital heart disease. Her heart defect is commonly associated with Trisomy 21 (more commonly known as Down syndrome). Two valves within Evelyn’s heart― the mitral and tricuspid valves― as well as the walls separating the heart chambers, did not develop correctly, which caused the right side of her heart to be underdeveloped and non-functional. Unfortunately, this condition can’t be “fixed,” only managed. This is typically done through three surgeries: the BT or Central Shunt, normally in the first days of life; the Bidirectional Glenn, usually between 3 and 9 months of age; and the Fontan, usually between 2 and 5 years.

In a typical heart, the right side of the heart pumps deoxygenated blood to the lungs, and the left side pumps oxygenated blood to the body. Because Evelyn’s right heart is too small to carry out its normal function, Evelyn has what’s referred to as single ventricle physiology. The purpose of the surgeries is to re-route the vessels around the heart so the one functional chamber pumps oxygenated blood to the body, and the deoxygenated blood bypasses the heart and passively drains back to the lungs.

Evelyn underwent her Central Shunt procedure at two months old to establish reliable blood flow to her lungs. Her Glenn procedure took place just after her first birthday to route the blood flow from the upper part of her body to her lungs. Her third heart surgery, the Fontan, took place when she was seven years old to re-route the remaining blood flow to her lungs. All three surgeries were performed by Dr. Richard Gates, director of cardiothoracic surgery at CHOC Children’s, co-medical director of the CHOC Children’s Heart Institute, and CHOC’s surgeon-in-chief.

In addition to check-ups for her heart every few months with pediatric cardiologist Dr. Pierangelo Renella. Evelyn makes visits to CHOC weekly for platelet transfusions. Along with her heart conditions, she was also diagnosed with idiopathic thrombocytopenic purpura (ITP), meaning she has low levels of platelets, a part of the blood that prevents bleeding.

Spending so much time in and out of the hospital and shuffling between doctor’s appointments could easily make a child scared of going to the doctor. That’s not the case with Evelyn.

“Everyone we’ve encountered at CHOC has been very kind to us. All CHOC staff is very patient with her and takes a lot of time with her,” says Evelyn’s mom Rosa. “I’m very thankful because thanks to CHOC, Evelyn is doing well.”

No matter the reason they’re visiting CHOC, Evelyn and Rosa always make a point to stop by the FRC, especially on days that Fran is volunteering.

“It makes me sad that patients are here long enough or often enough to get to know their names,” Fran says. “But I’m happy we get to offer them a distraction and sense of normalcy.”

Even though Evelyn doesn’t love reading, she loves being read to―especially by Fran. In addition to arriving early enough for appointments to make Fran’s Story Time, Evelyn loves playing blocks with her friend Fran as well.

“She feels right at home here in the FRC,” says Rosa. “Fran is very sweet to Evelyn and I appreciate everything she does for my daughter.

The admiration goes both ways.

“Evelyn is always so upbeat. Her energy is infectious. I sometimes feel that I get more out of volunteering than I give,” Fran says.

Being a bright spot in a patient’s day is what keeps Fran so connected to her role as a volunteer.

“If you can make a little one smile, then you’re doing something good.”

Learn more about becoming a CHOC volunteer.

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CHOC Children’s Heart Institute Helps Teen Runner Overcome Hurdles

Born with transposition of the great arteries (TGA), now 17-year-old Ryan Smith was rushed to CHOC Children’s Hospital, where he underwent an emergency procedure to regulate the flow of oxygen through his body until open-heart surgery could be performed a week later, and he spent two months at CHOC. TGA is a condition in which the large vessels that carry blood from the heart to the lungs, and to the body, are improperly connected.

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Ryan’s condition was severe, and his parents were advised that surgery would be complicated and long — roughly seven hours. During the operation, Dr. Richard Gates, cardiothoracic surgeon and co-medical director of CHOC Children’s Heart Institute, disconnected Ryan’s aorta and pulmonary artery before switching them back to their normal positions. The aorta was stitched to the left ventricle, and the pulmonary artery to the right ventricle. The coronary arteries were freed and connected back to the aorta. Ryan’s chest was left open for a few days while he healed.

Throughout his recovery, Ryan’s family remained by his side. They watched as he continued to fight, including learning how to breathe on his own and eat with the help of numerous CHOC specialists. The Smiths were overjoyed when they were finally able to take their newborn home.

Ryan remained under the care of the CHOC Children’s Heart Institute. He and his parents consider his CHOC team part of their extended family.

His mom Cathy says, “The care Ryan has received by the team at CHOC has been extraordinary. They have taken every step to make sure he’s been given the best care clinically, as well as making him feel a part of a great organizational family.”

Children born with TGA require periodic visits with their cardiologists, who check for heart-related problems, including fast, slow or irregular heart rhythms, leaky heart valves, narrowing of one or both of the great arteries at the switch connection site(s) and narrowing of the coronary arteries at their switch connection site.

Shortly after his first birthday, Ryan had his second open-heart surgery; this time to extend and strengthen his pulmonary artery. Additionally, he has undergone a few interventional procedures in CHOC’s cardiac catheterization lab. Most recently, he became part of a small number of patients – second at CHOC – to receive the world’s smallest pacemaker, the Micra® Transcatheter Pacing System (TPS), to help treat his irregular heart rhythm.

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About the size of a vitamin, the Micra TPS provides the most advanced pacing technology at one-tenth the size of a traditional pacemaker. And, unlike traditional pacemakers, it does not require cardiac leads or a surgical “pocket” under the skin to deliver the pacing therapy. The device is small enough to be delivered through a catheter and implanted directly into the heart. This offers patients a safe alternative to conventional pacemakers without the complications associated with leads – all while being cosmetically invisible.

For Ryan, a high school athlete, and his parents, the Micra TPS gave them all peace of mind and comfort in knowing Ryan is receiving the necessary therapy while still pursuing his passion:  running. He competes on his school’s cross country and track teams. When he’s not running, he enjoys watching races.

In addition to sports, Ryan excels academically and enjoys an active social life. His classmates consider him a leader and positive role model.

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“The thing that makes me most proud of my son is that he lives his life like any other teenager. Nothing is holding him back. He is a testament that no matter what hurdles life may put in front of you, anyone can achieve anything they put their mind and heart into,” shares Ryan’s dad Jim.

Ryan encourages other CHOC patients to pursue their dreams. “You should live your life how you want, as long as you stay within the parameters of your condition,” he explains. “And trust the people at CHOC because they know what they’re doing.”

After high school, Ryan plans on attending college, and, of course, continuing to run.

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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.

trent-recovering-tetralogy-of-fallot-surgery
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.’

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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.”

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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.

heart month
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).



Help a patient like Ryden. Donate here.




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