In the last days of October 2019, Lucas knew he was very close to death.
Born with multiple heart defects, the 14-year-old had undergone three open-heart surgeries in his early years. For a while, he thrived with his repaired heart.
But in the summer of 2019, his health took a severe downturn. It happened quickly—one moment he was a happy teenager going to school, the next moment he could barely walk ten feet without feeling exhausted. “He was withering away in front of us,” says Sabrina, Lucas’ mom.
Lucas was in dire need of a heart transplant—and time was running out.
How it all started
Fourteen years before, Lucas’ life was just beginning. He appeared to be a healthy baby boy. It wasn't until his seven-month checkup that there was any indication of a problem. At the time, he had been losing weight instead of meeting his developmental milestones.
“I'm holding Lucas, and the doctor pulls out this diagram of what a normal baby's heart looks like. And then a diagram of what Lucas' heart looks like,” Sabrina says. “Lucas had all kinds of things going in every which way, and I didn't understand any of it. Then the doctor says, ‘Within a year your son will require open-heart surgery.’”
That day was the beginning of Lucas’ journey to a new heart.
“He had perfect little feet, perfect little fingers. He was just the perfect first baby.”Sabrina, Lucas' Mom
A devastating setback
By September 2019, Lucas had spent nearly three months in the hospital as he waited for a donor heart. On September 14, his family learned that a heart had become available.
But their joy soon turned to crushing disappointment. Lucas’ transplant doctor, Phoenix Children’s Division Chief of Cardiothoracic Surgery Dr. Daniel Velez, came into Lucas’ hospital room and said, “I'm so sorry. I know we are ready to go back to the operating room. I know you were told this was the heart. But I've only had to do this three times in my career, and I must reject the heart because it's not good.”
After this news, Lucas went further downhill emotionally and physically. “He started to see that life was precious, and that death was real,” says Sabrina. Physically, he was on medication intended for his new heart, so when the transplant was canceled, these medicines “took a beating on his old heart.”
The obstacles kept increasing. First, the medical team intubated Lucas. Then they implanted a left ventricular assist device (LVAD), a device that helps pump blood from the lower chambers of the heart. When the LVAD didn’t work, Lucas was placed on an ECMO machine as a last resort.
An ECMO machine takes the blood out of the body and pumps it through a heart-lung machine before returning oxygen-enriched blood to the tissues. Simply put, it helps the blood bypass the heart or lungs, giving these organs a chance to rest. This machine is only used in critical situations as its risks are high—it supports a patient temporarily, but over time other organs are damaged. “It was terrifying,” says Sabrina. “We were looking at a week for Lucas to live while he was on the ECMO.”
What hope in the waiting really looks like
Lucas’ valiant heart could not sustain life much longer. He was in an induced coma while attached to the ECMO machine, and yet he could still think. Later, Sabrina asked Lucas what it felt like when he was “sleeping.”
“Mom, I felt like I was trapped,” Lucas said. “I couldn’t get to you. And I tried and I tried to get to you. So I just thought, ‘Well, all I can do is wait for hope.’”
One definition of hope is “the feeling that what is wanted can be had.” Family and Phoenix Children’s staff gathered around Lucas to hope with him. His grandmas came in each morning to pray. Ezekiel, the music therapist, strummed soft sounds on his guitar. And Sabrina told Lucas every day that a new heart was coming any moment, even as she struggled to believe this herself.
A week passed with Lucas on the ECMO machine. On his eighth day, Sabrina got a call that a donor heart was ready. “I remember crying, laughing and thinking, ‘Wow, this is it.’ If I had to describe what the emotional roller coaster felt like up to that moment—the pain, sweat and the tears—it was like having a baby,” Sabrina says. “I knew that we were out of that dark place. I knew that this heart was the one.”
Lucas received his new heart on October 30, 2019.
A poem Sabrina wrote in rhythm with Lucas' new heartbeat, created in honor of Amber, Lucas' heart donor:
One out of every 100 children is born with a heart defect. That means 15,000 of the 1.5 million children living in Arizona may need complex cardiovascular care, and possibly a heart transplant. Now is the time to invest in Phoenix Children’s Heart Center, for Arizona’s children, and for families like Lucas’, everywhere.
If you have a story about how your life has been touched by Phoenix Children’s, we want to hear from you.