A Reunion of Heroes: Katie’s Story

After recently being discharged, Katie Flathom stopped by the CHOC Children’s cardiovascular intensive care unit (CVICU) again to make some introductions.

Suddenly, the 16-year-old has a group of heroes in her life: the coach who resuscitated her on school campus and the CHOC team that treated Katie for three weeks and will continue her care as she navigates life with a newly diagnosed heart condition.

During a recent athletic conditioning class in school, Katie collapsed and went into sudden cardiac arrest.

Her trained and quick-thinking conditioning coach snapped into action and resuscitated Katie with CPR until paramedics could arrive and transport her to CHOC.

“It was the longest 10 minutes of my life,” said Greg Vandermade, Katie’s coach at Mater Dei High School who also credits other students for alerting him to Katie’s condition and calling 911, as well as fellow staff who assisted by obtaining an automated external defibrillator (AED) to shock Katie’s heart into a normal rhythm.

At CHOC, Katie continued to have irregular heartbeats that required further defibrillation and cardioversion, procedures that help restore the heart’s natural heart rhythm, said Dr. Anthony McCanta, a CHOC cardiologist.

Katie also went on extracorporeal life support, a treatment that takes over the heart’s pumping function and the lungs’ oxygen exchange until a patient can recover from injury. This allowed the CHOC Children’s Heart Institute team to continue to treat her life-threatening arrhythmias with medication, Dr. McCanta said.

Dr. McCanta performed an electrophysiology study procedure and implanted beneath Katie’s skin a subcutaneous implantable cardioverter defibrillator, a device that helps prevent sudden cardiac arrest in patients.

After Katie’s discharge and further testing, she was diagnosed with Arrhythmogenic Right Ventricular Dysplasia, or ARVD.  A rare type of cardiomyopathy  where the muscle tissue in the heart’s right ventricle is infiltrated and replaced by fatty tissue and scar tissue, ARVD weakens the heart’s ability to pump blood and makes the heart susceptible to life-threatening arrhythmias.

The diagnosis also means Katie, a cross country and track athlete, will need to give up running for good.

“It was hard at first,” she said.

But instead of sitting on the sidelines, Katie’s decided to pick up golf, a sport that’s compatible with ARVD.

Katie has even begun incorporating a golf swing into her physical therapy sessions at CHOC, and she had two clubs in tow as she, her family and coach Greg visited the CVICU recently.

heroes
When Katie came back to visit the CVICU team and reunite her heroes, her CHOC care team presented her with a heart-shaped pillow, which they all signed with well wishes.

There, Dr. McCanta and the CHOC team presented Greg with a plaque recognizing him for his swift response and efforts that surely saved Katie’s life.

“Coach Greg responded to Katie with CPR on the spot and saved her life that day,” Dr. McCanta said. “His heroic actions, and those of Katie’s schoolmates and staff, including obtaining and appropriately using the AED, are the reason that Katie is alive today.”

Katie’s story underscores the importance of being trained in CPR and in the use of AEDs, Dr. McCanta said.

“Having AEDs in schools and training staff and students in CPR with an AED are some of the most important interventions that we have in saving lives of young people experiencing sudden cardiac arrest,” he said.

Getting AEDs installed in schools is among the goals of CHOC’s Life-Threatening Events Associated with Pediatric Sports – or LEAPS – program.

Coincidentally, Katie’s own grandmother, a nurse and health services coordinator in the Irvine Unified School District, has collaborated with LEAPS and helped get AEDs installed on her district’s campuses.

“Never did I think though that this would happen to one of my own family members,” said Marcia, Katie’s grandmother.

Learn more about pacemakers and cardioverter defibriilators

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CHOC Recognized as Leader in Critical Care

CHOC Children’s has again been recognized by an international consortium for its excellence in extracorporeal life support (ECLS), a special procedure that takes over the heart’s pumping function and the lungs’ oxygen exchange until a patient can recover from injury or illness.

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.

ecmo

As an award recipient, CHOC has also earned another three-year designationas an ELSO Center of Excellence. CHOC is the only Orange County hospital offering ECLS, also known as extracorporeal membrane oxygenation (ECMO).

“This award validates CHOC’s efforts and commitment to providing exceptional, state-of-the-art critical care to patients and families, and can provide families with added assurance that CHOC is the right place to receive this special type of care,” said Dr. Joanne Starr, CHOC’s ECLS director and medical director of cardiothoracic surgery.

The ELSO Award of Excellence demonstrates an assurance of high-quality standards, collaboration, specialized equipment and supplies, defined patient protocols, and advanced education of all staff members. Additionally, the award is recognized by U.S. News & World Report and Parents magazine as one criterion for top institutions.

ELSO is an international consortium of health care professionals and scientists dedicated to the development and evaluation of novel therapies for support of failing organ systems.

Learn more about CHOC’s extracorporeal life support program

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Alicia’s Story: Repairing a Right-Sided Congenital Diaphragmatic Hernia

CHOC Surgical NICUAlicia was born at full term, beautiful with 10 fingers, 10 toes and a life-threatening defect buried inside her tiny chest.

She had a congenital diaphragmatic hernia (CDH), a condition where a hole in the diaphragm allows abdominal organs to move into the chest. And this case was especially serious.

Though less common, hernias on the body’s right side are more dangerous because the liver, a larger organ, can move into the chest cavity, impairing lung development, impeding blood vessel functionality and ultimately causing pulmonary hypertension, says Dr. Mustafa Kabeer, Alicia’s surgeon at CHOC Children’s.

Just 20 percent of CDH cases are right-sided, and about 40-50 percent of babies nationwide survive their treatment; conversely, more common left-sided hernias yield about an 80-90 percent survival rate, Dr. Kabeer says.

Prenatal meetings remain key

After the diagnosis, Alicia’s mother Marlen began meeting with Dr. Kabeer and other specialists to prepare for her baby’s birth and treatment afterward.

“It helped because we had the prenatal meeting,” Dr. Kabeer says. “That way, parents can connect a face to a particular job in the care of their baby. They are educated and know what to expect during treatment.”

Just hours after her birth, Alicia’s condition began dramatically deteriorating. A transfer to CHOC was necessary, and Marlen and her husband were warned that Alicia would not likely survive the 2-mile ambulance ride.

But she made it, and quickly began treatment under a life-saving device called extracorporeal membrane oxygenation (ECMO) to help her compromised lungs. First pioneered at CHOC about 40 years ago, ECMO is a heart and lung bypass machine that can be used to rest a failing heart or lungs, providing complete support until the organs recover.

About a week later, Dr. Kabeer performed the procedure to repair the diaphragmatic hernia, all while Alicia remained on ECMO with substantially high risks of uncontrollable bleeding due to the blood thinners needed while on the treatment.

Alicia sailed through the surgery with little bleeding, but within the next day or so, Dr. Kabeer needed to perform two separate procedures to relieve pressure building inside her abdomen that compromised blood flow to the lower half of her body.

Two weeks old and five surgeries

Shortly after this surgery, Alicia began to bleed. During the next four days, she had ongoing bleeding and during the fourth day, lost about 1,500 mL of blood, or about six times her normal blood volume. Hospital staff kept her stable, and Alicia was taken off of ECMO. Two days later, Dr. Kabeer performed a final surgery to close her abdomen, which had been left open all of this time to decrease pressure.

“All of those surgeries were very high-risk surgeries,” Marlen says. “There was a very high chance she wouldn’t make it, but she did perfectly.”

Throughout the entire process, Dr. Kabeer communicated with Marlen and Omar about the risks of the surgeries. And like every other time Alicia’s parents were cautioned about her survival, the tiny infant fought back.

Baby Alicia today.
Baby Alicia a few months after her surgeries.

“Even though it’s a difficult subject, and a complicated, emotional and anxiety-provoking issue, we want parents to understand the problem their child is facing and that we’re trying to help them and their baby overcome it,” Dr. Kabeer says. “That connection and rapport are very important and it all stems from honesty.”

“It involved a very transparent discussion,” Dr. Kabeer said. “I laid out for them all of the issues and all of my concerns, and made them see that we’re going to do our best and face these challenges together. I want to give parents reassurance and security to know that not only are they in a good place, but they’re with staff who are well trained.”

Coordinated care in the Surgical NICU

Between her five surgeries and afterward, Alicia was closely monitored inside CHOC’s Surgical Neonatal Intensive Care Unit, a special part of the hospital’s main NICU dedicated to the care of babies who need surgery.

In the unit, the team cares for patients jointly, discussing the cases of children like Alicia as a group and forming a treatment plan that often calls for the expertise of other specialties at CHOC.

After several months in the Surgical NICU, Alicia went home with her family. Today, she is a happy, charismatic four-year-old.

alicia-today-beach
Today, Alicia is a thriving four-year-old.

“Alicia’s case reinforces the fact that babies are extremely resilient,” Dr. Kabeer says. “It’s amazing that she tolerated all of this. Every patient is unique and this is a perfect example of why we should give them every chance possible.”

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How ECMO Can Save a Child’s Life

DomicoBy Dr. Michele Domico, medical director, CHOC Children’s ECMO service

Children who are hospitalized with critical cardiac or pulmonary disease and don’t respond to current medical treatments might be candidates for a life-saving device called extracorporeal membrane oxygenation (ECMO).

ECMO (also known as extracorporeal life support) is a heart and lung bypass machine that can be used to rest a failing heart or lungs, providing complete support for a few days, or even weeks, until the heart and lungs recover.

A physician from CHOC Children’s ECMO team can evaluate a child to see if he or she is a candidate for this specialized treatment. ECMO is not offered to every patient because it is a high-risk procedure with possible complications. However, ECMO has saved many children’s lives when all else failed.

CHOC was one of the first centers to use this life-saving device, to saving a newborn infant dying from lung disease in 1975. Since then, ECMO has become widely used for infants and children with certain life threatening lung or heart problems. CHOC remains today the only hospital in Orange County to provide this complex life-saving treatment.

ECMO is most often used for children born with congenital heart defects, post-surgical patients and children with severe pneumonia. In 2012, CHOC published a practice-changing study that suggested expanding the use of ECMO for patients with severe lung disease or pneumonia who were previously not considered ECMO candidates.

More broadly, the CHOC ECMO program has made great strides in recent years, with state-of-the art equipment, an increased number of patients, excellent outcomes and improved ECMO specialist training.

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.

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