Medical Emergency Disrupts Family’s Holiday Plans

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

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

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

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

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

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

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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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