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.

heart month
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.

heart month
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.

heart month
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.

heart month
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.

heart month
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).



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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

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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.

gates-and-noah
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.

edited-christmas-stocking
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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Choosing Your Child’s Heart Program

It can be frightening to hear that your newborn or child has a congenital heart defect and needs surgery. Congenital heart defects are relatively common, affecting about one in every 100 newborns in the United States. Your child’s doctor will often refer you to a heart surgeon if your child needs surgery. But, how do you know if the hospital where the surgery will be performed offers the best heart program for your child?

Not all hospitals that perform pediatric heart surgery are created equal. Infants and children who have heart defects or require heart surgery need to be cared for by a team of highly trained specialists in a facility that is designed to meet their needs. It’s best to do research on the hospital’s heart program, even if the surgeon or hospital has been referred by your child’s doctor.

One of the first things to look for in a pediatric heart program is to determine if the hospital has a specialized program and team of care providers who care exclusively to cardiac patients. Your child needs more than just a general pediatric surgeon and nurses, and adult heart surgeons typically don’t operate on children.

heart program

“Surgeons will be the first to tell you that pediatric heart surgery is a team effort,” said Dr. Richard Gates, surgeon-in-chief and medical director of the CHOC Children’s Heart Institute. “When looking for a heart program, look for an intensive care unit devoted entirely to pediatric heart patients, and if there are pediatric heart-focused nurses, anesthesiologists and perfusionists.”

A reputable, high-performing children’s heart program will use only specially trained and board-certified pediatric cardiologists, thoracic surgeons and anesthesiologists, as well as cardiac nurses and perfusionists (people who operate the heart-lung machine during surgery). The program should also have more than one heart surgeon in case an emergency arises and your child’s surgeon is not available.

Also, does your child’s heart program have a dedicated pediatric cardiovascular intensive care unit (CVICU) staffed with board-certified intensivists? A board-certified, pediatric cardiac intensivist has additional training in caring for critically ill children in the CVICU, and specialized CVICUs have been shown to improve patient outcomes and reduce complications.

When researching a heart program, be sure to also check if the hospital reports its heart surgical outcome rates. A reputable hospital will report their outcome rates to the Society of Thoracic Surgeons (STS) for the public to see. STS rates will often be displayed on the hospital’s website, but you can also access these numbers directly from the STS website. Remember, you want your program’s rates to be above the national survival rates.

Other designations to look for are hospital safety awards, such as Top Hospital designation by the Leapfrog Group. Leapfrog’s Top Hospital award is widely acknowledged as one of the most prestigious distinctions any hospital can achieve in the United States. Top Hospitals have lower infection rates, better outcomes, decreased length of stay and fewer readmissions. In 2015, only 12 children’s hospitals in the nation and only two in California earned the respected award.

CHOC Children’s has compiled a list of 10 questions to ask when choosing a heart program for your child. Use this checklist as a guide when talking to your medical provider before your child has heart surgery.

The CHOC Children’s Heart Institute offers state-of-the-art diagnosis and treatment for an entire spectrum of cardiac conditions. We have assembled an expert team of board-certified pediatric cardiologists, surgeons, intensivists, anesthesiologists, perfusionists, cardiovascular nurse practitioners, respiratory therapists, dietitians, social workers, child life specialists and case managers — all with specialized training and expertise. Learn more about heart surgery at CHOC.

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  • CHOC Heart Surgery Patient Joins Security Team
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  • By the Numbers: CHOC Children’s Heart Institute
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Kids and Heart Surgery

Boys_holding_heartCUTTING-EDGE CONGENITAL CARE

“In the newborn population, there are many [heart] conditions that may need surgery. One of the things to remember is that these types of surgery that are being done in the newborn period are relatively new, at least in the past 10 to 20 years,” says Dr. Starr. “Because of the technology,  now we’re able to perform complex surgeries.”

BLUE IS FOR BLOOD VESSEL

“When a baby is born with what’s called transposition of the great vessels, the two major arteries that come out of the heart are switched around,” says Dr. Starr. “The artery that’s supposed to go to the body is going to the lungs and the one that’s supposed to go to the lungs is going to the body. So the blood is mixed and the patient is blue, and that requires surgery in the newborn period.”

WHAT IS CHD?

“Congenital heart disease is a defect that forms while the baby is in the womb and the child is born with it, as opposed to an adult, who has coronary artery disease that’s acquired,” says Dr. Starr. “We usually separate out the disease into two categories: those who have enough blood flow to the lungs and those that do not,” says Dr. Starr.

SURGERY: WHAT PARENTS NEED TO KNOW

Before, during and after your child’s heart surgery, CHOC’s specialized team of doctors and nurses prepare parents for what to expect, including what their child will look like. Many parents wonder if their child will be like other kids after surgery. “Very frequently  the answer is yes,” says Dr. Starr. “They may have special needs, but if you go to a playground you won’t know the difference  between a child that’s had heart disease and a child that hasn’t,” she says.

FAST FACTS

  • The number of congenital heart disease cases that CHOC handles yearly: 200 – 300
  • Number of hours heart surgery can last: 3 to 4 hours
  • Number of beds in CHOC’s Cardiovascular Intensive Care Unit: 12

View the full feature on Kids and Heart Surgery

Dr. Joanne Starr
Dr. Joanne Starr
CHOC Congenital
Cardiothoracic Surgery Specialist

PHYSICIAN FOCUS: DR. JOANNE P STARR

Dr. Starr is a member of the Society for Thoracic Surgeons and the Congenital Heart Surgeons Society. She previously served as director of the cardiac surgery program at Children’s Hospital of New Jersey and as an associate professor at the New Jersey Medical School.

Dr. Starr’s philosophy of care: “Each patient is different and you have to treat each patient as a unique patient. It’s not just about the heart, it’s about the whole child and their family.”

EDUCATION:
New York Medical College

BOARD CERTIFICATIONS:
General and Thoracic Surgery

More about Dr. Starr

This article was featured in the Orange County Register on December 10, 2013 and was written by Shaleek Wilson.