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.

ecmo
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.”

ecmo
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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By the Numbers: CHOC Children’s Heart Institute

The CHOC Children’s Heart Institute offers state-of-the-art diagnosis and treatment for an entire spectrum of cardiac conditions, and we are the only Orange County facility to perform neonatal and pediatric open-heart surgery and cardiac catheterization.

In honor of American Heart Month, learn more about the institute.

heart institute

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Why One Mom Is Thankful for CHOC This Year

By Karen Stapleton, CHOC parent and mom of Noah

Happy Thanksgiving! My name is Karen Stapleton, and my son Noah is a patient at CHOC Children’s. As I prepare to celebrate the holidays with my family, I’m grateful we can be together since we have so much to celebrate. I’m also grateful for Noah’s many doctors and nurses at CHOC because without them, my son wouldn’t be alive.

Noah’s birth story

When I was 29 weeks pregnant with Noah, we learned that he had Down syndrome. Another prenatal ultrasound showed an abnormality in his heart, and we were referred to Dr. Pierangelo Renella, a pediatric cardiologist at CHOC, who diagnosed Noah with tetralogy of fallot, a serious heart defect that causes poor oxygenated blood flow from the heart to the rest of the body. I was scared, but having been a CHOC patient myself as a child, I knew my son would be in good hands.

Karen and Noah in the NICU, shortly after Noah was born
Karen and Noah in the NICU, shortly after Noah was born

On July 27 of last year our lives changed forever— Noah was born! I chose to deliver at St. Joseph Hospital in Orange so that my son could be as close to CHOC as possible. When he was born, there were so many doctors and nurses around. I saw Noah quickly enough to give him a kiss before he was whisked away to the Neonatal Intensive Care Unit (NICU) at CHOC.

Shortly after birth, Noah’s care team also diagnosed him with Apert syndrome, a genetic disorder that causes certain bones to fuse early. For Noah, that was his skull, fingers and toes.

 

A series of surgeries begins at 3 days old

Noah’s first surgery happened just three days after he was born. Due to the complexity of Noah’s conditions, the surgery was a team effort from multiple CHOC specialties. Noah’s gastroenterologist Dr. Jeffrey Ho; his team of cardiologists Dr. Renella, Dr. Michael Recto, Dr. Anthony McCanta, and Dr. Gira Morchi; his pulmonologist Dr. Amy Harrison; his otolaryngologist Dr. Felizardo Camilon; and the entire NICU team came together to prepare him and get him through that surgery.

It was a success, and 31 days after he was born, Noah finally came home! Weekly trips back to CHOC’s clinics included visits to gastroenterology, pulmonary, cardiology and craniofacial specialists. It was another team effort to prepare Noah for a second open heart surgery that he would eventually need.

gates-and-noah
Noah and his cardiothoracic surgeon, Dr. Richard Gates

But a few weeks later, Noah had respiratory complications, which lead to an emergency open heart surgery at just 2 ½ months old. Thanks to Noah’s cardiothoracic surgeon, Dr. Richard Gates, and Noah’s fighting spirit, he was able to come home shortly after surgery.

Celebrating Christmas at CHOC

Just days before Christmas last year, Noah had to be admitted to CHOC for respiratory failure. It was scary to see my baby sedated for 19 days. Dr. Juliette Hunt, a critical care specialist, recommended that Noah undergo a tracheostomy, where a small opening is made in his windpipe and a tube is inserted to help him breathe. Making a decision like that is hard and scary for a mom, but I had complete trust in Noah’s team, and if they knew it would help Noah breathe easier, then I knew it was the right thing to do.

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Noah celebrated his first Christmas at CHOC

After that, Noah started to thrive. He gained weight and became strong enough for his next open heart surgery with Dr. Gates. After a mere six days in the Cardiovascular Intensive Care Unit following this surgery, Noah got to come home again!

Even when Noah is doing well, sometimes it can be scary to care for him when he’s at home. During one of our hospital stays, I confided this fear in one of Noah’s favorite nurses, Karissa. She gave me specific tips on what to do during his tummy time and baths, and gave me the courage to care for my son. She encouraged me, and reminded me that CHOC wouldn’t advise me to do anything that wasn’t safe.

Noah and Karissa, a registered nurse at CHOC

Noah’s first birthday

All of this is a lot for a little baby to go through before his first birthday, but Noah has always surprised us and pulled through. Celebrating his first birthday meant more than celebrating his first year of life; it meant celebrating every fight Noah had won over the last year, and it meant appreciating a milestone that at times we thought we might never reach. We decided a super hero theme was perfect for his party because we think of Noah as our little super hero.

Noah celebrating his first birthday

After his birthday, Noah continued to flourish and grow! He started rolling over and actively playing, and he has not stopped smiling.

This progress allowed us to prepare for his next major surgery, a frontal orbital advancement, to reshape his skull and forehead that has fused too early due to Apert syndrome.

Before surgery could begin, the doctors needed to cut Noah’s hair to make a safe incision in his skull. We marked another one of Noah’s milestones at CHOC— his first haircut!

Noah received his very first haircut at CHOC from his neurosurgeon Dr. Michael Muhonen, prior to a skull surgery.
Noah’s very first haircut happened at CHOC. He received it from his neurosurgeon Dr. Michael Muhonen, prior to skull surgery.

With the expertise of his neurosurgeon Dr. Michael Muhonen and his plastic surgeon Dr. Raj Vyas, and a very short stay in the Pediatric Intensive Care Unit, Noah came home again! After yet another successful surgery at CHOC, his brain can now continue to grow.

Noah has more hurdles and additional surgeries ahead of him, but even with how much he’s fought, he continues to smile. He’s not cranky and he doesn’t cry. He’s enjoying every single day he gets to be here – and that’s the life he has taught me to live too.

If Noah’s care team ever needs a reminder of why they do what you do, I tell them: My son would not be here today if it were not for each and every one of them here at CHOC. And for that, my family will be forever grateful.

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February is American Heart Month — Cyrus’ story

Just in time for American Heart Month, learn about our courageous patient, Cyrus, who underwent complex open heart surgery. His successful journey was met by much celebration from his family and his team of CHOC experts.

Hypoplastic Left Heart Syndrome (HLHS) is a rare congenital heart defect, which is 100 percent fatal if left untreated. Sunny and Jereme Brixey knew about their baby’s risks even before Cyrus was born in 2008, having been prenatally diagnosed.

Prior to Cyrus’ birth, the cardiac team at CHOC Children’s already had a plan of action: an approach involving three different open heart surgeries. Three days after he was born, Cyrus underwent complex open heart surgery. He had a second heart surgery at 4 months and a third at 4 years.

After the third procedure in 2013, Cyrus took a long time to recover in the hospital. After being in the hospital for nearly two months due to persistent drainage from a chest tube, Cardiovascular Intensive Care Unit (CVICU) physician Dr. Michele Domico suggested that Cyrus could be discharged home with a portable chest drain. He would be the first patient in the hospital’s history to be sent home with this device. The cardiologists and surgeons agreed and ordered the new portable chest drain for Cyrus, allowing him to go home.

Cyrus, with Dr. Michele Domico, medical director of CHOC Children's CVICU and Choco, at a CHOC Night at Angels Stadium event.
Cyrus, with Dr. Michele Domico, medical director of CHOC Children’s CVICU and Choco, at a CHOC Night at Angels Stadium event.

At home, Cyrus’ parents took care of him and his chest drain so that he could heal, and the drain was able to be removed after a few weeks. This successful procedure was met by a large cheer from Cyrus’ entire CHOC team. For Sunny and Jereme, this expression of joy reflected the care Cyrus received every step of his journey. In addition to the clinical excellence of the medical team, the Brixeys believe the team’s positive, encouraging words, as well as the support extended to the entire family, were a huge factor in his recovery. Since then, the CVICU team has used the portable chest drain in several other patients with great success.

Learn more about the CHOC Children’s Heart Institute.


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CVICU Provides Special Post-Procedure Care to Heart Patients

Patients who have undergone complex, cardiovascular procedures at the CHOC Children’s Heart Institute require specialized care and attention. At CHOC, they get just that in a dedicated, 12-bed Cardiovascular Intensive Care Unit (CVICU).

In CHOC’s CVICU, children receive attention from pediatric cardiac-trained intensivists, nurse practitioners, critical-care registered nurses, and an interdisciplinary medical team. All rooms are private and fully equipped with leading-edge technology that meets the demands of monitoring and treating children with heart problems, and those who have undergone complex heart surgery and heart catheterization procedures. CHOC is the only facility in Orange County that performs open heart surgery on newborns and children.

That combination of well-trained experts and topnotch facilities can lead to improved patient outcomes. The Heart Institute has outcomes above the national averages for overall survival rate and neonatal survival rate. CHOC is routinely named to the Leapfrog Group’s annual list of Top Children’s Hospitals, recognizing a commitment to provide the safest and highest quality of health care.

“Cardiovascular patients are unique and delicate. They require complex care and management. CVICU staff members understand these kids’ physiology,” says Allie Quill, RN, a clinical outcomes coordinator at CHOC. “When our patients get into trouble, their treatment is not routine. All of our kids are so different and require such fine tuning.”

CVICU care team

Cardiac pediatric subspecialists are especially trained to care for heart patients in need of critical care, and they have advanced knowledge of cardiovascular disorders.

“Pediatric heart specialists have extra training and experience in caring for children with unique and severe cardiac disorders, something a general care team or an adult cardiac doctor may not be as comfortable with,” says Dr. Michele Domico, medical director of the CVICU.

The CVICU’s design also plays a critical role in improving outcomes for patients. The space encourages parent-clinical caregiver interaction, and ensures a peaceful, healing environment.  Our staff recognizes the role that loved ones play in patient healing.

Each private CVICU patient room is divided into three areas:

  • The first area, closest to the doorway, is the nurse’s zone. Here, visitors will notice a wheeled cart that holds a computer and supplies to allow bedside charting and full access to patients.
  • The second area belongs to the patient, and features gas hook-ups, monitors and other equipment.
  • The third area is the parent zone, which includes a sleep sofa, reading light, sink, telephone and other amenities to ensure family comfort.

The CHOC CVICU also includes two fully-equipped procedure rooms that allow physicians to perform life-saving surgery on patients who otherwise could not be transported out of the unit.

Certain heart conditions warrant a series of surgeries throughout childhood, necessitating several stays in the CVICU. For that reason, CVICU staff members often develop close and lasting relationships with patients and families.

“Parents often come back and visit us after their child has been discharged, to thank us for taking special care of their child,” says Domico. “Every year our team receives dozens of school photos and holiday cards from families who we were fortunate enough to bond with in the CVICU. It’s a privilege to see the children we’ve treated grow up and have a healthy childhood.”

Learn more about CHOC’s CVICU.

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