Meet CHOC NICU Graduates

As we prepare to celebrate the opening of our all-private-room NICU, say hello to a few graduates of the CHOC NICU.

Dylan & Payton Law

Dylan, age 9, and his younger sister Payton, age 7, were both born 6 weeks premature and cared for by the doctors and nurses of the neonatal intensive care units at both CHOC Children’s and CHOC Children’s at Mission Hospital. Their mom McKenzie shares a thank you to their care teams.

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My family will forever be grateful for the blessings CHOC has given us― our children. Not only did Dr. Hanten save Dylan’s life, but all the nurses, doctors, and staff at CHOC took incredible care of Dylan, giving him strength and providing unforgettable emotional support for our family during a terribly scary time. Two years later those same doctors and nurses took care of his little sister Payton, who also spent a month in the NICU. They treated us like family, not just patients. They calmed our fears, held our hands, and loved our babies. CHOC has a special team of angels here to carry our little ones for us when we needed them the most.

When Dylan was born, doctors and nurses swarmed the delivery room. The doctors administered several doses of epinephrine to Dylan, but he didn’t breathe on his own for 22 minutes. They finally heard a faint heartbeat, but told us the likelihood of Dylan making it through the night was uncertain. At 2 days old he was transported via ambulance to CHOC in Orange, where we found out that he had brain damage. It was devastating to hear that our son may not walk, talk or eat on his own. Today, Dylan is a happy, kind, and compassionate little 9-year-old. He has ataxic cerebral palsy and struggles daily with his hands shaking, but that doesn’t stop him from enjoying school, Jujitsu, playing with his little sister, going to church, doing art projects, and playing outside. -Mackenzie Law

Noah Wenrick


Nine hours after Noah was born, a nurse noticed something was off during a routine check-up, and soon the family was sent to the NICU. Noah was diagnosed with a lung infection and stayed in the NICU for almost two weeks. His mom Ashlie pens a thank you note to his care team.

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A huge thank you from the Wenrick family to the whole CHOC NICU team for all that you do every day! You made us feel like family while Noah was in the NICU. Being new parents it was scary for us, but you helped us understand every step up to the day Noah got to go home! Now he’s a healthy and active 3-year-old. -Ashlie Wenrck

Ryan McLeod


You first met Ryan, a graduate of CHOC’s small baby unit, in November during #PrematurityAwareness Month. Look at him now! Ryan is a happy-go-lucky boy who recently celebrated his first birthday with a trip to Disneyland. At his Mickey Mouse-themed birthday party for family and friends, his parents set up a CHOC Walk station and encouraged their loved ones to join Ryan’s Sidekicks, their first-ever CHOC Walk team. Ryan’s dad says, “The way my wife and I look at things after going through this experience is that we want as many people and possible to gain awareness and support the CHOC NICU and their exceptional Small Baby Unit.”

Austin, Michaela & Caden Shay


Triplets Austin, Michaela and Caden were born a day shy of 31 weeks and spent 80 days in the neonatal intensive care unit at CHOC Children’s at Mission Hospital. Their mom Jennifer, a clinical nurse at CHOC at Mission, shares a thank you for her co-workers who cared for her children.

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On behalf of my entire family, I would like to thank the doctors and nurses that took care of our triplets at CHOC at Mission in the fall and winter of 2009. Austin, Michaela and Caden thrived with the tender loving care provided by the staff. Born a day shy of 31 weeks, Austin weighed 3 lbs. 9 oz., Michaela weighed 3 lbs. 3 oz., and Caden weighed a whopping 2 lbs. 0.5 oz. Despite my nursing knowledge, I was treated first and foremost as a mom. The nurses, doctors, and staff were always very professional in addition to being extremely considerate and attentive to our needs.

We cannot thank you enough for what you have given our family. We truly believe that our children― Caden in particular― would not be here today without the care they received in the NICU. It is because of the dedication of the CHOC at Mission NICU staff that we have three relatively healthy 7-year-olds at home today. What a happy and crazy home it is! Though we can never repay you for all that you have done for our family, we wish to thank you from the bottom of our hearts. You are all honorary aunts and uncles! Without the dedication of this team, I would not be the mommy of four that I am today. You have blessed our family beyond measure.     -Eternally grateful, Jennifer Shay

Willow Dee


After a healthy pregnancy, Willow was born just after 36 weeks via an emergency c-section. She was immediately transported to CHOC for body and brain cooling, to prevent seizure, stroke or damage to the brain. Her mother Cara shares a thank you note to the team that cared for now thriving almost-two-year-old.

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To our CHOC caregivers,

We want to thank you with our entire hearts for truly transforming a nightmare into a beautiful dream. After an extremely healthy pregnancy without any red flags, Willow was born at 36 weeks and 2 days. Twelve hours after my water broke, there was extreme blood loss prompting the nurse to call a code. The on-call OB-GYN at the hospital where I delivered was in my room within seconds. Willow’s heart rate was around 60 beats per minute, only half of what it should be. An emergency cesarean immediately followed. Doctors discovered that I had a very rare condition called velamentous cord insertion where the umbilical cord inserts into the fetal membranes, then travels to the placenta. This means exposed blood vessels are vulnerable to rupture. Willow had lost a substantial amount of blood that required two blood transfusions and she was intubated.

The life-saving, phenomenal level of care that we received from our team at Hoag Hospital quickly continued at CHOC. After a perfectly healthy pregnancy, I never could have foreseen my daughter would be taken via ambulance to a different hospital just five minutes after I saw her for the first time. EVERY single day, I think about our nurses and doctors at CHOC. They were calm, abundantly informative and so gentle. The doctors answered as many questions as we had and we were never rushed. They are truly masters of their craft. Before this experience, I never thought a NICU could be comforting.

The NICU doctor said that Willow had experienced “insult” to her brain; the lack of blood flow had caused hypoxic-ischemic encephalopathy. Fortunately, CHOC has a body and brain-cooling process that is used in situations like this to prevent stroke, seizure and damage to the brain. Our daughter is lucky; her 72-hour cooling process resulted in zero stroke, seizure, or worse.

Today, Willow is 20 months old and thriving! She is a miracle because of all the hands that worked on her. We feel grateful to have spoken on behalf of CHOC over the last 20 months to help raise much needed funds for the new all-private-room NICU that opens this summer. We believe in paying it forward to the future families that now can stay with their baby as they heal. We love our caregivers at CHOC more than they may know.                                               –Love, Cara Dee

Faith Amouroux

Diagnosed at 18 weeks gestation with a congenital diaphragmatic hernia, Faith was born at 40 weeks gestation and spent four months in the neonatal intensive care unit. Today, she is a happy and active six-year-old girl. Her family shares a note of thanks for the team that cared for her.

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Our family thanks God everyday and we are forever grateful for the caring and dedicated NICU team at CHOC. Our daughter, Faith was diagnosed at 18 weeks gestation with a birth defect called CDH (Congenital Diaphragmatic Hernia). We learned that 80 percent of her diaphragm was missing and were told that the statistic were not good. Her chances for survival were slim and if she did survive, she would have many health issues. Faith was born at 40 weeks gestation and after ECMO, CDH repair surgery & four months in NICU she pulled through. Faith is now 6 years old and has had a few minor hurdles but continues to defy the odds. She is doing great. Faith loves to sing, dance, play dress up, jump rope and read. Thank you CHOC; you have an awesome NICU team. -Amouroux Family

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CHOC Walk in the Park 2017: Why I Walk – Team IronJax

By Seth Keichline, Team IronJax

We participate in CHOC Walk in the Park in honor of our son, Jaxson, who died in 2012 at 4-years-old following a drowning accident at a neighbor’s pool party. Jax was transferred to CHOC Children’s Hospital from another hospital, and the CHOC staff spent the next three hours doing everything they could to save our boy. The grace, compassion and solace that the CHOC staff showed us left an overwhelming mark on my wife and I. We lost our boy, but it was if they lost him with us.

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Jaxson passed away at age 4 after a drowning accident at a neighbor’s pool party. His family participates in CHOC Walk to honor his life and thank the pediatric intensive care unit staff members who showed compassion and grace to their family.

We walk in Jax’s memory. It’s a way to honor his life and the way he touched so many people in his short time with us, all the while helping to raise money for the hospital. We first started walking in 2012, just a few months after Jax passed away. A friend of mine worked at Disneyland and had worked on the event before, and mentioned it to me. I don’t think we signed up until about six weeks before the event, and we just figured our family and maybe a handful of friends would join us. We ended up with over 75 team members and raised more than $10,000.

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Jaxson’s family (father Seth, mother Kristina, older siblings Grayson and Ellie, and younger brother Phoenix) pictured at the 2016 CHOC Walk in the Park. The Keichline family participates in CHOC Walk in the Park to honor the memory of their son Jaxson who passed away in a drowning accident.

I’ll always remember that first year. There were so many emotions – we were in the thick of grieving, the rush of scrambling to get a team together in such a short time – but we felt a sense of pride on how we honored our sweet boy.

We are most inspired by the compassion and grace that the CHOC staff showed to our family. That is what we will always remember.

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Every year, Jaxson’s family and friends participate in CHOC Walk in the Park to raise much-needed funds for CHOC Children’s as a way to honor his memory.
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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.

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.

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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.”

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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.

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CHOC Walk in the Park 2017: Why I Walk – Team Miranda

Seven years ago, Miranda woke up screaming in the middle of the night from unbearable head pain. She couldn’t move or recognize her parents, and then she collapsed.

Miranda’s parents rushed her, a 10-year-old at the time, to a local hospital. Physicians there initially told them to wait three days for observation.

Dr. Jason Knight, a CHOC Children’s pediatric critical care specialist and medical director of CHOC’s emergency transport services, was on call at that hospital that day, and met with Miranda’s parents, Regina and John.

An Emergency Transport to CHOC

“Dr. Knight explained what was happening better than anyone else at the hospital,” Regina remembers. “He suggested we transport her to CHOC so she could be seen by pediatric specialists. We were scared to move her, so we asked Dr. Knight if he would transport Miranda if she were his own daughter. He said yes, and we trusted him.”

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Dr. Jason Knight, critical care specialist, chair of the department of medicine, and medical director of emergency transport services at CHOC Children’s

Dr. Knight recalls, “As the physician covering the local hospital that day, it was my responsibility to assure that Miranda received the appropriate care in a timely manner. As soon as I assessed her condition and reviewed the CT scan of her brain, it was clear to me that Miranda needed to be transferred to CHOC immediately. I contacted Dr. Michael Muhonen, a pediatric neurosurgeon at CHOC, and coordinated Miranda’s transfer to CHOC.”

Scans revealed she had an arteriovenous malformation (AVM), a tangle of weakened blood vessels that had ruptured and started to bleed in her brain. Upon arrival at CHOC, Miranda immediately underwent neurosurgery with Dr. Muhonen, medical director of the neuroscience institute at CHOC.

“Miranda was critically ill upon arrival to CHOC. She reminded me of my own three daughters― innocent, beautiful and vulnerable. It was with this in mind that I approached her operation― do what it takes to keep her brain alive and functional,” recalled Dr. Muhonen.

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Dr. Michael Muhonen, medical director of the neuroscience institute and director of neurosurgery at CHOC Children’s

After a successful four-hour surgery, Miranda was placed in a medically-induced coma for several days. Her parents didn’t know if she would survive.

“When Miranda was in a coma, I told Dr. Knight that I wanted to take a photo of her so that I could show her when she woke up, but that I didn’t want to take it if she wasn’t going to make it,” recalls Regina. “For a few days, he wouldn’t let me take the photo because he wasn’t sure if Miranda was going to survive. Then one day, Dr. Knight told me it was ok to take a photo of her, and I knew that meant she was going to make it.”

John adds, “My family is intact today because of wonderful doctors like Dr. Knight, Dr. Muhonen and their teams. It’s just amazing what CHOC does. We are so blessed.”

The Long Road to Recovery

Miranda’s recovery process included child life specialists, physical therapy and rehabilitation. She spent one month at an inpatient rehabilitation facility followed by an additional three months of outpatient care learning how to walk and talk again.

The first year after surgery was critical. Miranda saw Dr. Muhonen every few months for checkups to monitor her brain, as well as a CHOC ophthalmologist to make sure her sight was progressing.

“The AVM and the clot were removed successfully, and Miranda has recovered with minimal long-term deficit,” says Dr. Muhonen. “My reward is not only seeing a disease-free brain on the post-operative MRI, it is the omnipresent smile and effervescent personality that Miranda still has, despite her near-death experience.”

Everything came back except her sight. She lost 25 percent of her vision in both eyes, but that hasn’t stopped her from dancing, her favorite activity since age 8. Miranda’s parents had to supervise her at all times for the first year after surgery to make sure she didn’t have a seizure (a possible side effect of brain surgery), which meant that her mom went to every dance practice and every pool party to ensure her daughter’s continued safe healing.

Giving Back to CHOC

A few months after Miranda’s surgery, her family was invited to participate in CHOC Walk in the Park by friends.

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Miranda and her family at their first CHOC Walk in the Park, just a few months after her emergency neurosurgery

“After what we went through, we felt closely tied to CHOC. We walked that year and fell in love with the event. We realized this was an affordable way to give back to CHOC,” recalls John. “My favorite memory was our very first CHOC Walk. Miranda walked alongside us, which was a huge accomplishment. A couple months before that, we weren’t sure if she was ever going to walk again. To see her walk on her own was the most memorable moment for me.”

The family’s first CHOC Walk was especially impactful for Miranda herself.

“I will never forget attending my first CHOC Walk one year after my surgery. I remember seeing other patients participating in the walk with their own team just like me, only they needed walkers or wheelchairs to have the capability of walking the entire distance. Seeing other patients that were struggling to do the simple task of walking, something that people take for granted, made me reflect back to being a patient at CHOC, where I once struggled with relearning how to walk during physical therapy,” recalls Miranda. “From that moment on, I promised myself I would always participate in the CHOC Walk and give back as much as I could, not only to represent the patients who couldn’t recover as fast as I did, but also for the patients that don’t make it. I am reminded every day by the scar on the back of my head of how blessed I am to have been a patient at CHOC.”

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Every year since her emergency surgery, Miranda’s family rallies dozens of friends to participate in CHOC Walk in the Park.

Every year since then, Miranda’s parents gather dozens of friends, family and co-workers to join Team Miranda, the CHOC Walk team they formed in honor of their daughter. They formed their team with the help of the Littlest Angel Guild, a philanthropic group that raises funds to support the mission of CHOC.

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Miranda and her family at the 2012 CHOC Walk in the Park

“We encourage people we meet to participate in CHOC Walk to help provide the best medical care for the children in our community. You never know if or when CHOC’s services will be needed for your children, for your friend’s children, for your neighbor’s children, or even a stranger,” says John, whose employer, Hill Brothers Chemical Company also sponsors CHOC Walk, in addition to the other philanthropic events benefiting CHOC. “We learned firsthand how much everyone at CHOC cares – the doctors, the nurses, the administrators, and staff throughout CHOC all genuinely care about the children and their families.”

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Team Miranda at the 2013 CHOC Walk in the Park

Experience at CHOC Inspires Future Career

Now a senior in high school, Miranda is preparing for graduation and heading off to college. Inspired by her experiences at CHOC, she is planning to major in psychiatry and dreams of becoming a pediatric optometrist.

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CHOC Walk in the Park 2017: Why I Walk – Team Brave Boyle

Lizzie Boyle is mom to CHOC Children’s patient and cancer warrior Ella, age 6 and serves as team caption for CHOC Walk’s Team Brave Boyle

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There are many ways that grateful families can support CHOC. Why do you participate in CHOC Walk every year?

Walking was the most crucial part in Ella’s recovery. As she braved her 14 rounds of chemotherapy, multiple surgeries, and many scans and procedures under anesthesia, I knew as a mom that it was important to get her moving. CHOC encouraged us as parents to be active participants in Ella’s recovery, and how crucial it was that she must get out of bed and walk the halls of the hematology/oncology unit to survive. The CHOC Walk is a direct reflection of what happens inside that unit at CHOC. Get up, survive, and walk alongside people who you may never know by name. We learned that the power of being together, all for the purpose of knowing someone in their lives was affected by this hospital, is a tremendous feeling.

What inspired you to become part of CHOC Walk? How long have you been participating?

The CHOC Walk was always been something we knew about within our community, however not until my daughter was a patient herself did we walk. Last year, my sister Caitlin and brother-in-law Rhett took it upon themselves to create Team Brave Boyle, and by the grace of God and many other hands we were able to walk that day. Some members of our team have participated for years in support of the care their own children received years ago, but much of our team was experiencing it for the first time. The phrase I heard the most from our team that day was, “We will do this every year. This is amazing.”

What is your favorite memory from a previous CHOC Walk?

Well that is a tough one to answer! I will say it was when we were in a holding pattern waiting to walk down Main Street. The Brave Boyle team was stretched out five people wide and at least 40 feet back. I looked ahead of us and saw a group of our oncology nurses; I looked behind me and saw my sisters; I looked around me and saw Ella’s classmates sprinkled around with their parents. To see the sacrifices that so many of our supporters made to be there that day was humbling,  and I felt so sad that Ella wasn’t able to walk with us that day. Then I looked to my right and there was a large group holding a sign for their daughter who is now an angel. I quickly became overwhelmed with emotion. Just then, over the Disneyland speaker, “Shake it Off” by Taylor Swift started playing. The entire group began to sing, and it brought me back to day one of Ella’s treatment when we started the tradition of singing that song for her. It was exactly what we needed at that very moment.

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What would you say to a community member to encourage them to participate in their first CHOC Walk?

It is an experience that allows you to celebrate all life, and your support system—the child, the sibling, the grandma…the people who hold us up. The day is beyond a fundraiser, it changes your entire outlook on what a hospital represents.

What inspires you most about the care being delivered at CHOC?

In our 12 months living off and on at CHOC, my daughter walked onto that 5th floor each time to be greeted as if, ‘Welcome Home.’ In the same respect, days later as we were discharged, they celebrated, praised her, and said, ‘Say hi to your sister!’ They knew Ella Grace Boyle, and every 5-year-old should feel that love no matter what they are facing.

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CHOC Walk in the Park 2017: Meet Team Hope

By Ashlie Wenrick, mom of CHOC patient Noah

I was inspired to become part of the CHOC Walk in the Park when I was in junior high, as a way I could help children in my own community who were  at CHOC Children’s. I did all I could to raise money, made calls to family and friends, wrote letters and went door-to-door asking for donations. That’s where my passion for raising money for CHOC all started and every year my parents and I would participate in the CHOC Walk.

My son Noah was born in 2014 at St. Joseph’s, right next to CHOC. Nine hours after he was born, a nurse noticed something was off during a routine check-up, and soon we were being sent to the neonatal intensive care unit (NICU). It took a few days to determine exactly what was wrong. Noah was diagnosed with a lung infection and stayed in the NICU for almost two weeks.

Having participated in the CHOC Walk for so many years, I knew that CHOC was an amazing hospital, but I didn’t think I would ever be on the receiving end of their care. Being a walker for so many years and then having your own child be a patient at CHOC can be very emotional! CHOC did everything they could to make us feel comfortable when we were there and their staff was amazing!

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Meet Noah, the inspiration behind CHOC Walk in the Park’s Team Hope

In 2014 my husband and I created Team HOPE in honor of Noah. It started off as a small team, but last year Team Hope had around 90 walkers and raised more than $16,000 for CHOC. I never imagined Team HOPE would be such a big team! . Thanks to CHOC,  Noah is now a happy, healthy 3-year-old and for that we will continue walking for CHOC helping raising money.

My favorite memory from all CHOC walks is when you are standing on Main Street, waiting with thousands of walkers getting ready to start the CHOC Walk. I love looking around and seeing how excited everyone is and thinking all of us came together to help raise money for CHOC and knowing there are some amazing stories on why money is raised is an amazing feeling!

A few tips for first time CHOC Walkers: remember that in fundraising, every dollar counts in making a difference. On the day of the walk, allow extra time to park and find your way to the front of Disneyland as the trams are not running. Last but not least, have fun while raising money for the children.

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Landon’s Life-Saving Jejunal Atresia Surgery

Lizette Lough, experiencing a seemingly normal pregnancy, was making final preparations to welcome her first baby, when her water unexpectedly broke at 33 weeks. She was rushed to San Antonio Regional Hospital in Upland, close to home, where her son Landon was born early on May 3, 2016.

After a few days in the hospital, Lizette and her husband Sean noticed the baby had not made a bowel movement. Tests revealed that Landon had an obstruction in his intestine. His physician recommended Landon be transferred immediately to CHOC for an emergency surgery with Dr. Peter Yu, a pediatric general and thoracic surgeon.

“My husband and I lost it,” Lizette says. “Our baby was only three days old and weighed about 4 pounds. The thought of surgery was beyond frightening.”

Upon arrival at CHOC, the Loughs were immediately made to feel at home by the staff, who helped them find a nearby hotel. Dr. Yu explained every scenario of the complex surgery in a compassionate and confident manner, the Loughs recall.

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Landon was born at 33 weeks and diagnosed with jejunal atresia, despite prenatal genetic testing and a healthy pregnancy.

“Landon was in stable condition when he arrived at CHOC, and I’m very pleased that our expert transport team was able to get him here quickly and safely. If there had been a delay in transfer, Landon could have become very sick and it’s very possible that more of his intestine could have died. If that would’ve happened, he may not have had enough bowel to adequately digest food, which can be incompatible with life,” Dr. Yu says.

Landon was diagnosed with jejunal atresia, a rare condition – approximately 1 in 5,000 births – in which the small intestine is incompletely developed, leading to one or more gaps, or blockages, in the intestinal tract.

Lizette had gone through the required genetic tests prior to Landon’s birth, and jejunal atresia – often diagnosed prenatally – was not detected.

Additionally, Landon had malrotation of his intestines, which failed to coil in the proper position in the abdomen. This led to twisting of his bowel. If surgery had been delayed for longer, Landon could have died.

Landon’s surgery involved making an incision on his abdomen, examining the entire length of his intestine and untwisting it, removing the dead bowel, stitching together his small intestine, and performing a Ladd’s procedure. A Ladd’s procedure places the intestines back into the abdomen in a safe configuration to prevent future twisting of the bowel.

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Landon and his dad Sean in the surgical NICU at CHOC after Landon’s jejunal atresia surgery

Sean, who works as a law enforcement officer, recalls how traumatic this was for his family. “I’m used to working in stressful situations, but this was a different kind of stress,” he says. “We were so happy that our baby had a successful surgery and that he was better. However, we were still waiting for him to have his first bowel movement. We were trying to stay positive.”

After his first bowel movement indicated that his intestines were recovering well, and spending about a month in CHOC’s surgical NICU, Landon was finally able to go home with his family.

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Landon and his mom Lizette during his first feeding, which took place in the surgical NICU at CHOC after his jejunal atresia surgery

“It takes a team to successfully care for sick babies and complex patients,” Dr. Yu explains. “Landon would not have had the excellent outcome that he had without our wonderful neonatologists, experienced and skilled pediatric anesthesiologists, Melissa Powell, our dedicated surgical neonatal nurse practitioner, and the outstanding NICU nurses who have dedicated their lives to taking care of newborn babies such as Landon and countless others. Together, we have the only dedicated surgical NICU in the area, with a special focus on taking care of newborns with surgical problems.”

Thanks to the expert multidisciplinary care provided at CHOC, today Landon is a happy baby, meeting all his milestones. The Loughs are enjoying their brave little boy, and look forward to his first birthday next month.

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Landon is looking forward to celebrating his first birthday at home with his parents.

“Dr. Yu and the nurses in the NICU were so empathetic and amazing. They saw us through so much throughout our stay and we will forever be thankful,” Lizette says.

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Child Life Supports Family on Hospital Journey

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.”

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How RSV Changed the Way I Parent

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.

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Andre, diagnosed with RSV at three weeks old and hospitalized at six weeks, was treated at CHOC Children’s at Mission Hospital.

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!

RSV

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.

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Even though Andre and his parents spent his first Christmas at CHOC due to RSV, Santa still managed to find him.
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Andre’s presents from Santa were delivered to his room in the pediatric intensive care unit despite his hospital stay due to RSV.

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.

RSV
While he was hospitalized for RSV, Andre smiled for his parents for the very first time.

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.

RSV
Today, Andre is a happy and healthy three-month-old baby, after his bout with RSV.




Learn more about the CHOC RSV Program




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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.

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.

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

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

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Kayleen Enoka and her son Ryden.

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

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

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



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