First-time parents Lilli and Josef Jonathan beam with joy as they talk about their toddler, Levi, whose infectious smile, and appreciation for life’s simple pleasures light up their world.
The Jonathans smile as they share what sets apart their cheerful toddler, who is just two months shy of his second birthday.
“He connects us with how beautiful the world is," Lilli said. “He has such a love and appreciation for life," Josef added.
But at just 3 weeks old, Levi wasn't displaying the vibrant spirit his parents see today.
During the first few weeks of Levi’s life, Lilli and Josef knew something wasn't right with their son.
“For every mom out there, trust your gut,” Lilli said.
It was that gut feeling that compelled Levi’s parents to find out what was going on, even when his symptoms initially seemed minor.
The Jonathans noticed Levi was tired, lethargic and had difficulty eating. “I just knew something wasn’t right,” Lilli said.
Hours of tests, then a diagnosis
On June 26, 2022 Levi’s parents took their 3-week-old son to UCLA Santa Monica Medical Center. He was admitted around midnight, and by 7 am the next morning he couldn't breathe on his own.
Lilli recalls a doctor at UCLA Santa Monica Medical Center telling her, “Something is about to happen, and it’s going to be overwhelming, but we’re all here, and we’re going to figure out what’s going on.”
Lilli said the doctor was referring to Levi’s oxygen level, which had dropped so low that medical staff rushed into the room to administer more oxygen. Shortly after, Levi was transferred to the Pediatric Intensive Care Unit, then the Pediatric Cardiothoracic Intensive Care Unit at UCLA Mattel Children’s Hospital.
After several hours conducting tests there, Juan Alejos, MD, medical director of the Pediatric Heart Transplant/Cardiomyopathy Program at UCLA Health, and clinical professor in Pediatric Cardiology at the David Geffen School of Medicine at UCLA, approached Levi’s parents.
Dr. Alejos had diagnosed Levi with a coarctation of the aorta, a congentical heart defect characterized by narrowing of the major heart blood vessel, resulting in restricted blood flow to lower-body organs.
“It could be life-threatening if it’s not diagnosed because it can put organs below the level of your heart at risk of not getting enough blood supply,” Dr. Alejos said. “Symptoms include shortness of breath, difficulty breastfeeding, inconsolable crying, or working hard to breathe.”
Myke Federman, MD, clinical professor of pediatrics, fellowship program director for Pediatric Critical Care, and the medical director of the Pediatric Cardiothoracic Intensive Care Unit, was among Levi’s care team. She explained that coarctation of the aorta accounts for approximately 5% of congenital heart defects.
“I credit his parents for insisting something wasn’t right,” Dr. Federman said. “I also credit the doctors and nurses who saw him and recognized that something more was happening.”
Hope amid the fear
Mixed in with all the medical terminology doctors used to explain Levi’s condition, his parents became hyper-focused on two words Dr. Alejos said that day: It's fixable.
“I sobbed,” Lilli said. “Those were the two best words I’ve ever heard.”
Two days after his diagnosis, Levi underwent surgery led by Ming-Sing Si, MD, a congenital cardiac surgeon at UCLA Health, to address the narrowing of the aorta. Within 24 hours post-surgery, he started to show remarkable signs of recovery.
“We like to say Levi had surgery on a Wednesday and was smiling by Friday,” Josef said.
Since Levi’s surgery, his heart has been in excellent condition.
“Babies are so resilient,” Dr. Federman said. “(Levi’s) heart muscle immediately improved, and over time, it pretty much returned to normal. With a healthy heart, there are no limits on what Levi can achieve in enjoying his toddler years.”
His parents describe him as one of the healthiest and happiest kids today. Involved in nature outings, soccer and swimming classes, Levi embraces the wonders of the great outdoors, always sporting a big smile.
As Levi’s parents reflect on his healing journey, they can't help but express their gratitude for the medical team who guided their son to recovery.
“Reliving this has been difficult,” Josef said. “So, the most we can do is shout from the rooftops how incredible the people who touched our son’s life are.”
The Jonathans say they are thrilled to be celebrating Levi’s next birthday, in June.
“For his second birthday, we’re excited to celebrate with friends and family,” Lilli said. “As we move further away (from his health scare), the saying that ‘time heals everything’ feels even truer.”
