A mom changes the course of her son’s nearly fatal event
Alex doesn’t remember much about what happened on the life-altering day he was at a playground with his mother, when he was 4 years old. “We were at a children’s park in San Jose [California], I was playing at the top of a slide, and I suddenly collapsed,” he says. His mother, Mary Nopachai, however, remembers the traumatizing day well. She saw Alex about to fall from the top of the slide and ran just in time to catch him. She saw his labored breathing “and knew something horrible had happened,” she says.
Beating the odds
But luck was on their side in a number of critical ways. First, Mary recognized the severity of the situation and quickly called 911. Second, she had CPR certification and started it immediately. And third, firefighters happened to be nearby and responded to her 911 call in just six minutes. The firefighters recognized that Alex was in cardiac arrest and used an automated external defibrillator (AED) at the park in order to correct his heart rhythm. They brought Alex to a nearby emergency room, where doctors continued resuscitation—delivering shocks to his heart to return it to a normal rhythm—and gave him heart medication.
After Alex was stabilized, he was transferred to the Cardiovascular Intensive Care Unit (CVICU) at Lucile Packard Children’s Hospital Stanford.
Every second counts
A cardiac arrest prevents the heart from pumping effectively and causes it to stop. While it’s extremely rare in children, it’s also fatal, and people in cardiac arrest require treatment within minutes. “The American Heart Association [AHA] says up to 7,000 children a year have cardiac arrest, and less than 10% survive, due to the lack of awareness and CPR training,” says Mary.
“A lot of studies show that every minute counts, from the time a person has cardiac arrest to when CPR is initiated, and that is linked to the patient’s overall neurological outcomes and survival,” says Kara Motonaga, MD, pediatric cardiologist and electrophysiologist at Stanford Medicine Children’s Health’s Betty Irene Moore Children’s Heart Center. When the heart stops pumping, the brain and body do not get the blood and oxygen they need, which can result in damage to the brain and other important organs that may not be reversible.
Getting to the heart of the issue
At Stanford Children’s, the pediatric cardiology, electrophysiology, and neurology teams did a full workup on Alex to see if his brain or other organs were affected and to diagnose what had caused the cardiac arrest. They studied the electrical system of his heart and used imaging studies to examine his heart’s structures.
During this whirlwind, Mary was shaken but knew that Alex was in good hands. She was relieved that the nursing staff was so calm and reassuring. “I could definitely tell the staff was very experienced in Alex’s condition, and we felt well taken care of,” she says. Her burning question—would her son recover neurologically?—was quickly put to rest. “Thankfully, because his mom gave him CPR and he got early support from paramedics, Alex showed no signs of neurological impairment,” says Dr. Motonaga.
The next question to be addressed was: What caused this to happen? A thorough cardiac workup was done, including imaging studies, genetic testing, and blood tests. The doctors were able to pinpoint a cause, and this allowed them to develop a treatment plan.
The solution: An ICD
Some types of arrhythmia conditions require only monitoring or medication. Others require heart surgery or a cardiac rhythm device, such as an automatic implantable cardioverter defibrillator (ICD)—a small device placed in the body and connected to the heart with leads. If a dangerous heartbeat occurs, the ICD sends a shock to restore the heartbeat to a normal rhythm, much like an external defibrillator.
For Alex, the answer was an ICD. “In general, if a child had a cardiac arrest and there’s no structural explanation or other reversible cause, we consider an ICD,” says Dr. Motonaga. “People who have had a prior cardiac arrest are more likely to have another one, and for patients with certain causes of arrhythmias, an ICD is generally the most effective way to prevent sudden death from another cardiac arrest.”
Dr. Motonaga explained to Alex’s family how an ICD would be able to continuously monitor his heart rate and correct it if there was a problem. ICDs can be implanted by either pediatric electrophysiologists or cardiothoracic surgeons, depending on the age and size of the patient. Cardiothoracic surgeon Michael Ma, MD, treats many of the Stanford Children’s patients who have arrhythmias, and he implants several ICDs a year. He’s passionate about helping these children. “I think that we do really important work here at the Moore Children’s Heart Center, and everyone is really committed,” he says. “We know what’s at stake—a family’s really loved child. We all take that very seriously, and getting to be on a team that has this philosophy is extremely rewarding.”
Alex had the ICD placed at Stanford Children’s, and after a few days spent recovering, he was transferred back to his primary hospital, with a care plan in place devised by Dr. Motonaga.
Spreading the word, paying it forward
Alex just turned 14, and it’s been almost a decade since his cardiac arrest and ICD procedure. Since then, he has been careful not to overexert himself and tires more easily than other kids his age. But aside from that, he says, “it really doesn’t affect me too much.” He stays active with community basketball, golfing, and video games. His favorite hobby is creating animation.
Alex still takes heart medication and goes back to Stanford Children’s a few times a year to see Dr. Motonaga and to get his ICD checked. Dr. Motonaga appreciates that she still sees Alex. “I have gotten to know the family really well, and to watch Alex grow over the last decade brings me a lot of joy. That is one of the most fulfilling parts of my job,” she says. “As a little boy, he used to take singing lessons, and he’d sing for me at appointments. Now he’s a very mature, thoughtful teenager.”
Alex’s maturity is evident in other ways, as well—he, his sister, and his parents have been able to take what was a traumatic event for their family and turn it into a positive outlet through advocacy work. They’re now all CPR trained, and they regularly do community events to get the word out about the importance of early CPR and how to do it. Mary is passionate about increasing CPR awareness and training in the community and in schools, in particular.
Stanford Children’s also does a lot of advocacy work. Lynda Knight, MSN, RN, program director of the Revive Initiative for Resuscitation Excellence at Stanford Medicine Children’s Health, was also inspired by a personal experience to start the Revive program to educate people about the need to learn CPR. The program includes an advocacy component, such as training Bay Area firefighters and simulating actual calls in which they have responded. It’s also provided patient families with more than 20,000 AHA-endorsed self-instructional kits, called CPR Anytime, that teach the lifesaving skills of CPR.
Celebrating wins
At the Betty Irene Moore Children’s Heart Center at Stanford Medicine Children’s Health, care teams support the whole patient family dealing with heart conditions in ways that go beyond providing excellent clinical care for the patient. One way is through “Connecting” events, offered by the Pediatric Cardiac Psychology Program and the Pediatric Electrophysiology and Arrhythmia program. The center’s psychologist, Lauren Mikula Schneider, PsyD, is at the center of organizing these Connecting events. She seeks to help patients and families cope with the challenges and changes brought by having an ICD. Alex and his family go to the annual daylong event every year.
“It’s great for kids who have ICDs, like Alex, to get together,” says Mary. And she enjoys talking with other parents and sharing their experiences. “These conditions are rare, and it emotionally helps to connect with other families.”
The Connecting event emphasizes the fact that there is an entire cohort of young patients who are cardiac arrest survivors, thanks to advances in technology and CPR education. “In the past decade, there’s been a big push for CPR awareness and training, and as more people are trained, the survival rates of out-of-hospital cardiac arrest are improving,” says Dr. Motonaga.
The event is another reason why Mary feels comforted by having Alex’s care overseen at Stanford Children’s. “To have Alex cared for by this team is definitely reassuring for me and my husband,” she says. “They do everything to make sure that Alex and other kids live a normal life—and he pretty much has.”
Learn more about our CPR training program and our heart care for children with conditions from simple to complex.
