This Newborn's Life Hangs by a Thread: The Shocking Heart Condition That Could Change Everything!

Before their son was even a month old, Karen and Kevin Brutocao faced a monumental choice. Their baby, Liam, was born with a fatal heart condition, leaving them with the difficult decision of either providing comfort care or embarking on the challenging journey toward a heart transplant. Living in Northern California, the couple was determined to explore every possible avenue to save their second-born son. However, they discovered that the top hospitals in their area were unable to take on such a medically complex newborn.

In a stroke of hope, Liam’s Bay Area cardiologist reached out to UCLA Health. “He said, ‘UCLA thinks outside the box,’” Karen, 36, recalls. “He really thought we would have a chance to be accepted at UCLA. He was right.” The family, residing in the picturesque vineyards of Hopland, where Kevin works at his family’s winery, made the journey to the Ronald Reagan UCLA Medical Center to begin an uncertain wait for a heart.

Dr. Juan Alejos, pediatric cardiologist and medical director of the Pediatric Heart Transplant and cardiomyopathy program at UCLA Health, explained the process: “The average wait is about six months, but it could be tomorrow or it could be a year and a half or more.” In total, Liam would wait four months before receiving his successful transplant. Throughout this challenging time, his medical team and parents worked tirelessly to keep him stable.

A Surprise at Birth

Liam was born on November 2023, weighing over 9 pounds, following a routine pregnancy without any detected heart abnormalities. However, immediately after delivery, he exhibited a low heart rate and a bluish hue. “I got to see him for just half a second before they started working on him,” Karen recounted. Kevin accompanied Liam to the NICU, while Karen visited him before he was airlifted to UC San Francisco. The sight of her son with tubes covering his face was shocking, but she felt an unyielding resolve. “It was absolutely shocking but it was like, what do we need to do next?” she reflected. “For whatever reason, God gave Liam to someone who could handle it.”

Preliminary imaging revealed a significantly enlarged heart, leading to a diagnosis of hypertrophic cardiomyopathy (HCM). This condition, characterized by the thickening of the heart's walls, can severely impede blood flow and lead to fatal arrhythmias. “I’ve never seen a case that severe in a baby that young,” Dr. Alejos noted. “Even in an adult, it would have been severe.”

At just six days old, Liam required supplemental oxygen and a feeding tube to receive Karen’s pumped breast milk. By Thanksgiving, doctors informed the Brutocaos that Liam could not survive without a transplant and that even the potential listing for a heart might not guarantee his survival. They were faced with a life-altering decision.

“For the next 24 hours, we debated whether to actually list him or not,” Karen said. “We just didn’t know anything about it. We didn’t want to create a terrible life for a child. Then we decided we have to go for it.” Dr. Alejos emphasized that while most families choose to pursue a transplant, their commitment is crucial due to the complexities involved, from the scarcity of donor hearts to post-operative care and emotional challenges.

A Move for Liam

Liam was just one month old when he was flown to UCLA Health. The family, including Karen’s parents, relocated to Westwood. In mid-December, after a thorough evaluation, Liam was officially listed for a transplant. During his stay on the cardiac floor, the Brutocaos began changing diapers and helping him practice using a bottle, a brief period of normalcy that was soon interrupted as Liam's health began to deteriorate.

After displaying signs of not getting enough oxygen, Liam was moved to the pediatric intensive care unit. Karen’s mother, Debbie, played a vital role, spending nearly every night with him to allow Karen and Kevin some much-needed rest. “We were able to be huge participants in his care,” Karen shared. “We paid attention to everything and whenever we didn’t know what was going on, we asked.”

As Liam’s condition worsened, he underwent open-heart surgery on February 2024 for the placement of a ventricular assist device (VAD). By late March, he faced heart failure due to the thickening of his heart chambers. The medical team explored all options to stabilize him, including Extracorporeal Membrane Oxygenation (ECMO), a high-risk life-support machine. Dr. Alejos noted the unique challenges presented by Liam’s case, stating, “There are very few programs that have seen anything like this.”

On April 18, 2024, the Brutocaos received a life-changing call from UCLA Health, indicating that a heart had been provisionally accepted for Liam. “You can imagine it’s like the best feeling in the world to be told they might have a heart for your son,” Karen expressed. The transplant surgery, led by Drs. Reshma Biniwale and Ming-Sing Si, was a success, and by midnight that day, the family learned that the surgery had gone well.

Liam’s old heart, which weighed 287 grams—approximately ten times the size of a normal baby heart—was found to have a rare genetic mutation that likely developed spontaneously during gestation. Post-transplant, Liam surprised his medical team with his rapid recovery, leaving the hospital in May, just five weeks after the surgery.

By August, the family finally returned home to Hopland, where they had left behind a nursery stocked with newborn items. “Getting back to our house was like a scene from a movie that’s been paused,” Kevin recalled.

The Brutocaos faced ongoing challenges as Liam adjusted to life post-transplant, including the management of medications and a feeding tube, with even a kidney stone developing as a side effect. However, Kevin reflected, “You kind of feel like you’ve been through so much, you can do anything.”

Now a lively toddler, Liam enjoys pizza, pasta, and roasted broccoli with lemon. “It’s so fun to see Liam’s personality come out,” Kevin said, noting his son’s newfound love for play and humor. Karen added, “You wouldn’t be able to tell he had a heart transplant by looking at him except you can see his scars.”

The journey culminated in further joy as the family welcomed Sophia, another baby girl, born in the same hospital room as Liam. As they continue routine checkups at UCLA Health, Dr. Alejos affirms, “He’s doing great.” Karen emphasizes her gratitude for the UCLA Health team, stating, “I believe they saved my son and gave him a chance when others wouldn’t.”