Two-year-old Aliyah Islava was fighting what her family thought was a mild stomach virus. When the symptoms did not improve, mom Rosemary took her, at the recommendation of her pediatrician, to the emergency department. Within 24 hours, Aliyah was undergoing brain surgery at CHOC Children’s Hospital.
The diagnosis of stage 4 medulloblastoma, a fast-growing, aggressive brain tumor, shocked Rosemary and her husband Hector and propelled the entire family, including Aliya’s siblings Branden, 10, and Miranda, 5, on a life-changing journey. The family had the support of the entire CHOC care team, which to their surprise included the Cherese Mari Laulhere Child Life Department.
Trained professionals with degrees in child life, child development, human development or recreation therapy, CHOC’s child life specialists strive to normalize the hospital environment for patients and their families. They help make things like medical equipment and procedures feel less strange so that patients and their families feel more at ease in the hospital.
Rosemary recalls with fondness the first time she met Ashley, an oncology child life specialist, shortly after Aliyah was admitted.
“Everything was happening so fast. We were in shock and terrified. Ashley helped explain everything and calmed our fears. She also explained to our other two children what was happening, so we could focus on Aliyah,” says Rosemary.
Aliyah spent almost seven months in the hospital. Child life specialists used distraction techniques and medical play to help her every step of the way. They also helped Branden and Miranda by continuing to explain what was going on with their little sister and giving them opportunities for play.
“Child life helped normalize the entire experience for Aliyah, Branden and Miranda, and made sure they didn’t miss out on just being kids. Even more amazing, they were never afraid, not even Aliyah,” says Rosemary.
A big part of childhood is birthday parties. Aliyah was very ill in the oncology intensive care unit when she was about to turn 3. Rosemary wasn’t sure her daughter would be permitted out of the unit. But as soon as Aliyah got clearance from the doctors for a short visit to the playroom, child life organized an impromptu birthday celebration.
“I will never forget the party that child life planned. In a short amount of time, they managed to make a poster, collect presents and sing to her,” remembers Rosemary.
Following Aliyah’s last chemotherapy treatment, more than a year after her diagnosis, child life specialists sang once again; this time, “Happy Last Chemo.” They continue to support Aliyah today as she faces additional health challenges. Most recently, a child life specialist accompanied Aliyah into the operating room. Aliyah didn’t even need medication to keep her calm. She was comforted knowing child life was by her side, says Rosemary.
“Their patience, their understanding, their compassion…these are just some of the things that make child life specialists so unique,” she explains. “They bring you hope and step in when we as parents are overcome by worry and fear. I am very thankful for having them as part of our journey.”
By Alexandria Salahshour, CHOC parent and mom of Andre, four months
This story is about my son who got sick with Respiratory Syncytial Virus (RSV) at three weeks old and was hospitalized at six weeks. I’m sharing our story so other parents are aware of the dangers of RSV and know what to look for. It’s important to always follow your own instincts no matter what. YOU know what’s best for your child. You are your child’s voice.
What is RSV?
RSV is a highly dangerous respiratory infection. It can be a potentially deadly virus if not taken care of in time. Most children will catch RSV by their second birthday, but the younger they are, the worse it can be. RSV is primarily spread through child care centers and preschools due to being in close proximity to many children. For most children, RSV will cause nothing more than common cold-type symptoms, but for some children like my son Andre, it can lead to more serious life-threatening problems such as bronchiolitis, pneumonia, collapsed lungs, respiratory failure, airway inflammation and even death.
The early signs of RSV
This roller coaster started when Andre was three weeks old. Before Andre was born, I made everyone in my family get the whooping cough vaccine along with the flu shot if they planned on touching Andre. Paranoid? No. Proactive? Yes. When Andre came it was so exciting! It was the best day of our lives.
Though we allowed people to hold the baby, I would always say “Don’t forget to wash your hands first.” After Andre got sick, I realized that the REAL questions I should’ve been asking were “Are you sick? Have you recently had a cold? Are your children sick? Are people at your work sick? Are children you are around sick?”
When Andre got sick with RSV, it came as a shock. How did he get so sick so fast? I had a healthy pregnancy, and Andre was born healthy. At three weeks old, he became congested and his breathing sounded off. It wasn’t wheezing, but more like a grunting sound. The morning after he started showing symptoms, we brought him to his pediatrician. I brought recorded videos of Andre’s breathing so the doctor could hear the congestion and grunting.
Our pediatrician didn’t think there was anything going on. He advised us to run the humidifier and to use saline drops. He thought Andre would be just fine, but told us to come back if he got worse, or got a fever with wheezing. Andre never ran a fever. We did the saline drops and humidifier, but it didn’t seem to be getting any better.
That night after our first pediatrician appointment while Andre was sleeping, we had noticed that would choke on his phlegm, be uncomfortable and would occasionally stop breathing. We continued to follow our pediatrician’s recommendation of using the humidifier and saline drops, but it wasn’t helping. I knew that there was something more serious going on.
A few days later, Andre started to wheeze and have breathing problems in his sleep. We rushed him to the hospital where I had delivered him. It was scary to be there because we didn’t know what was wrong with our baby. I had never heard of RSV before, but when I researched his symptoms it kept coming up. The doctor tested Andre for RSV and it came back positive. We were discharged with the same instructions his pediatrician had given, and told to come back if it got worse.
A couple of days went by, and Andre wasn’t getting any better. We took him back to the pediatrician for an after-hours appointment. He was their first RSV patient of the season. The pediatrician let us know that RSV is like a roller coaster, especially in someone so young like Andre. We were once again told to use saline drops, a humidifier and aspirations, but Andre continued to get worse.
Caring for a sick baby during the holidays
At this point the holidays were right around the corner, and my family had arrived from Dubai. This vacation meant the world to me, but unfortunately, it was short-lived. As soon as my uncle held Andre for the first time, he could tell something was seriously wrong. He felt vibration sounds through Andre’s back, almost as if whatever he had was in his lungs.
Suddenly, Andre took a turn for the worse. He was starting to sleep a lot more and just seemed so “out of it.” We decided to take Andre back to the hospital. We took him to the closest hospital to where we were at the time. I told the nurse that Andre was diagnosed with RSV about a week ago, and we were told he would get better, but that he was getting worse. I told him that his retractions were so bad you could see his ribs, and that he was congested, looked like he couldn’t breathe, and had been choking on his phlegm. The doctor said he no longer had the virus and that he may have caught a different virus that was causing this to happen. Even though his retractions and wheezing were so bad, she didn’t see it as anything alarming. They did an X-ray to be sure to make sure it wasn’t pneumonia, and thank God it wasn’t
The next day I saw that Andre’s hands were pale and extremely clammy. Even his lips looked somewhat discolored. I didn’t want anyone to think I was crazy or a hypochondriac, especially because every time we went to the doctor for this virus, we were sent home and told it would get better.
The nightmare begins
Two days before Christmas, our nightmare really began. We woke up in the morning and it was as if Andre had somehow taken another turn for his worse. He seemed so out of it, wasn’t eating well, and had zero interest in breastfeeding. Andre stayed asleep a majority of the day, and didn’t have as many wet diapers as he normally did. By the end of the day he looked beyond lethargic, and almost lifeless.
I did more research about RSV and found that a baby should have 50-60 breaths per minute. Andre was only at 40 breaths per minute. We called the after-hours number for our pediatrician, which is initially probably what saved my son’s life. They immediately connected us with the on-call doctor: Dr. Barbara Petty, a CHOC Children’s pediatrician.
I didn’t know this pediatrician at the time, but I’ve told myself that one day I’ll make an appointment with her just to thank her. She got on the phone and was so kind and soft-spoken, she seemed so concerned and you could tell that she probably has the most incredible bed side manner. She was giving us the most information we have heard thus far. Luckily, while on the phone with Dr. Petty, she was able to listen to Andre, heard the way he sounded and listened to how much he was struggling.
She told us that we needed to get to the hospital right away. We let the doctor know that we’ve already gone to two different hospitals, and she told us that we should take him to CHOC Children’s at Mission Hospital. When we got off the phone with her we couldn’t thank her enough. That phone call will forever mean the world to me.
I remember it was raining that night. We quickly rushed out of the house and went to CHOC at Mission. It was a busy night in the emergency department and there were doctors and nurses everywhere. Our nurse checked Andre’s oxygen levels and found it was only at 70. A healthy, full-term baby’s level should be closer to 100!
The doctor came in looked at Andre and just kept saying everything was going to be alright and that they were going to take care of him. He told us that it was good we brought him in because his oxygen was so low. They gave Andre an IV, hooked him up to a heart monitor, and gave him oxygen. It was incredible how quickly a team can work to get a baby stable.
A diagnosis at last
He tested positive for RSV again, but he was also diagnosed with bronchiolitis, rhinovirus and respiratory failure. Finally, Andre was in a relaxing state hooked up to the monitors, oxygen, IV fluids and tons of steroids. When the doctor came in and let us know what was going on, he said that because Andre was so young he needed help breathing to fight off this virus. The doctor admitted Andre into the pediatric intensive care unit (PICU) so that they could keep a close watch on him. When we got into our room, three nurses immediately came in to help care for our baby boy.
Celebrating Christmas at CHOC
The next day was Christmas Eve, our first Christmas as a family, and we were still in the hospital. It was sad being in the PICU and seeing our son struggle in the state that he was in, but we knew Andre was in the BEST place he could be and getting the best care.
Thankfully, Christmas Eve was special at CHOC. A dog named Piper from their pet therapy program visited all the children. We woke up in the PICU on Christmas morning and there was a big bag full of presents for Andre. The tag read “To: Andre, From: Santa.” It was the kindest thing I’ve ever seen.
Though we were in the PICU, CHOC did an incredible job at making a not-so-normal Christmas feel normal. We were so thankful for CHOC and all of the wonderful donated presents from incredible people. Andre got so many toys for Christmas! Because of these kind people, this became a Christmas we will never forget and forever be SO thankful for. It still brings tears to my eyes every time I think about our experience at CHOC Children’s.
When the nurses came in on Christmas, they told us that Andre was doing better and we could start the process of slowly weaning him off the oxygen. His oxygen level was stable, his heart was stable and his retractions were better. It was so nice to see improvements on our little guy!
The next day he tolerated more weaning, and we got to leave the PICU for a room in the regular pediatrics unit. GREAT NEWS! He continued to improve as the days went by. A new doctor came in to give us a run down on what was going on and gave us so much helpful information.
He explained that this virus usually comes from day cares, preschools, and school-aged children and then it’s quickly passed on to others. He let us know that this virus is a roller coaster; it gets bad and then gets better, it gets bad and then it gets better. There’s really no way of telling you when the virus will expel from the baby’s body, especially when they are so young. The doctor told us because he’s so young, the virus can last in his system up to a month!
Bring our boy home
Andre was still doing great and had life back in him. He even smiled for the first time! It was so special and it was the sweetest smile I’ve ever seen. I’ll never forget it. His care team was continuing to wean him off oxygen.
As they got closer to letting him breathe on his own, I was so nervous since that would decide if we got to go home or not. The night went by and our little champion did amazing! I was scared to bring him home but the nurses and doctors knew best, and I knew I had to learn to trust their decision since they’re professionals Before we were discharged, the nurses came in and asked us if we had any questions. They let us know that if Andre started to decline, to come back right away. The hospital was great. They had an incredible staff and we were treated so well! When we left, they gave us a few extra pacifiers, a bunch of swaddles, a nice blanket with bears on it, and a pack of diapers. It was nice to have stuff to go home with in case we were out of anything.
Thankful for CHOC
I can never thank the staff at CHOC at Mission enough for taking care of Andre the way that they did. They made us feel like we were at home, even though we weren’t. Everyone was so comforting and understanding. If we ever have another emergency, which hopefully we will not, we’ll be returning to this hospital.
I hope that no one else’s child has to go through what our baby went through. But just in case, parents should know the symptoms of RSV, be prepared and trust your instincts.
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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.
“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.
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.
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.
“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.
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.
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.
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.
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).
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.”
“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.
“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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A teenaged patient’s longtime arrhythmia has been repaired and her quality of life dramatically improved thanks to emerging technology and the skill of a CHOC Children’s cardiologist.
Lauren Flotman, 15, had experienced irregular heartbeats for years before Dr. Francesca Byrne, a pediatric cardiology specialist, diagnosed her with supraventricular tachycardia, or SVT, and Dr. Tony McCanta, a pediatric heart rhythm specialist, repaired the condition through radiofrequency ablation.
The episodes first surfaced when Lauren was about 8 years old and they began increasing in frequency as she aged. They’d occur without warning or pattern.
For Lauren and her family, the sudden attacks caused great concern. Not only was she drained and tired after an episode, but Lauren dreaded them happening, especially during a pep squad routine when her teammates were depending on her.
Lauren was elated to finally have a name for her condition.
“It was a huge relief for sure to have a diagnosis,” she says. “I always had to just describe the feeling because I didn’t have a name. Now I can say I have SVT.”
Lauren’s diagnosis was reached after a Holter monitor captured her heart racing at 220 beats per minute. Dr. Byrne referred Lauren to Dr. McCanta to discuss treatment options, which included anti-arrhythmic medications or an ablation procedure. After reviewing their options carefully, the Flotmans decided to pursue ablation.
For Lauren’s ablation, Dr. McCanta used a new technology called an intracardiac echocardiogram, or ICE, to create a three-dimensional map of the inside of her heart without using fluoroscopy (X-Ray radiation), enabling a catheter to apply radiofrequency energy to the precise location in her heart causing her SVT.
ICE technology involves a tiny ultrasound probe imbedded into a catheter that is advanced through the vein directly into the heart, allowing for very clear, accurate image quality. These ultrasound images then integrate with a three-dimensional electroanatomical mapping system, which acts like a GPS (global positioning system) for the catheters within patients’ hearts, to provide an accurate real-time shell of the inside of the patient’s heart. This allows the doctor to safely move catheters inside the beating heart without using radiation.
While radiofrequency ablation has become a safe and common treatment for SVT in children and adolescents since the mid-2000s, intracardiac echocardiography (ICE) has not traditionally been used in pediatrics due to the large-sized catheters. But when a smaller catheter was created, which was more suitable for the size of young patients, Dr. McCanta and the electrophysiology team from the CHOC Children’s Heart Institute were among the first in the world to routinely utilize the new technology in pediatric and adolescent patients.
“For a young, healthy patient like Lauren, increasing safety and minimizing the use of radiation are extremely important, while still being able to provide a cure for her arrhythmia with ablation” says Dr. McCanta.
After a few days of taking it easy following the procedure, Lauren felt back to her usual self – only without the constant fear her heart would suddenly begin racing.
“Our team loves utilizing advanced technologies like ICE and three-dimensional mapping to help children, adolescents, and young adults with heart rhythm problems,” says Dr. McCanta, “Seeing patients like Lauren get back to all of the things they love doing is why we do this!”
Since the procedure, Lauren has been vocal at church to educate her peers about being conscious and vocal about their health.