Landon Howard (11) didn’t want to die young.

He didn’t want to leave the group of close-knit friends he’d had since second grade. He didn’t want to leave his loving family who was always there for him. He didn’t want to leave the world, not being able to help all those he wanted to help. He didn’t want to say goodbye so soon.

However, after experiencing heart failure for the first time in October 2021, that goodbye seemed unavoidable.

It started in July 2021 when Landon noticed a strange feeling in his left arm. Following the use of a rowing machine at his friend’s house, he noticed that his arm began to feel tingly — something that he hadn’t felt before.

“I am not the most physically fit, so I  used the rowing machine for maybe 10 minutes,” he said. “[Afterwards], I came inside and said, ‘Hey Mom, my arm all across the tendon feels numb and tingly.’”

At the time, Landon and his mom, Jen Howard, attributed the sensation to him not having exercised that part of his arm in a while. Later, however, they realized that was not the case.

“I came up to my room two hours later and [my arm] was still hurting,” Landon said. “The tingling had spread over my chest and my heart was feeling weird. From there, we messaged my doctors.”

Landon was born with hypoplastic left heart syndrome (HLHS), a birth defect that affects blood flow through the heart. Having had 22 heart surgeries throughout his life, the Howards were used to dealing with HLHS. Those surgeries have included heart catheterizations, an operation in which a catheter is placed in a blood vessel of the heart, surgeries for his pacemaker, a device that regulates the beating of the heart, and five other open heart surgeries, three of which were to redirect flow through his heart to compensate for his smaller left ventricle.

“We found out midway through my pregnancy [that Landon had HLHS],” Jen said. “We deal with [problems] as [they] come, and then we go back to normal. We like normal and boring. Normal and boring is good for us.”

The August after the rowing incident, however, their lives became anything but that. After hearing back from their doctor, Landon was admitted first to the ER, and then to the hospital, where doctors noticed that his heart was beating too fast and that his pacemaker needed a reset.  They were also informed that Landon’s liver was failing. In October of 2021, Landon started to experience swelling in his legs, prompting his parents to schedule another doctor’s appointment.

“It was supposed to be [that] I leave school second period during lunch [and] come back fourth period,” Landon said. “I stayed there for two weeks.”

That day, surgeons performed an emergency heart catheterization on Landon, and diagnosed him with protein-losing enteropathy (PLE). From there began what seemed like a downward slope of events. After getting discharged from the hospital, Landon, who was initially 5’3” and 97 pounds, had lost 18 pounds by the time he was discharged.

In 2022, Landon contracted COVID-19, respiratory syncytial virus (RSV), and a cold back-to-back across the next two months, all of which put his life in danger due to his physical condition at the time. In addition to this, he was temporarily taken off of the transplant waiting list until April 11, 2022.

Landon had to stay in the hospital for doctors to monitor him. Two months in, Landon was informed that he had heart failure and needed a new heart. Without it, there was a high chance he’d pass away by the time he turned 18. Compounding the problem, Landon’s low weight meant the possibility of getting a heart transplant was next to nothing.

According to Landon, this information took a huge toll on his mental health.

“When I was first diagnosed, I genuinely had to ask myself ‘What did I do wrong?’” Landon said. “I’ve been told by my friends, my family that I am a good person and that I do good stuff. I’ve done the right thing. I believe if you do something good, something good will come back to you. I guess what was going through my head was ‘Why me?’”

While the news devastated Landon and his family, they still held onto hope of a better future for him as they waited for a new heart.

“I felt pretty stumped when things went wrong pretty quickly,” Jen said. “We heard a lot of things we didn’t think we’d hear for many more years, but [I’d] always tell Landon, ‘[we’ll] do our research, and [we’ll] get him to the right place that he has to be.’ He [was] in a good spot where he’s healthy enough. We [wanted] him a little healthier to regain some of the weight he lost.”

However, as months of waiting turned to years, Landon had started to lose hope. By September of 2023, the Howards were still waiting for a heart and Landon had accepted his fate.

“I’ve always had dreams and goals of being able to live a fulfilling life, of being able to help others,” he said. “I’ve had thoughts of ‘What if this is my last day? What if I just don’t wake up and that’s it?’”

According to Landon, one of the main things that kept his spirits up during that time was his group of friends.

“They just [took] my mind off of things,” Landon said. “The oldest friend, I’ve known since second grade and the newest friend is from sixth grade. Since then, we’ve all been one big group.”

Having those close friends, however, was also part of what made the thought of saying goodbye so difficult.

“I have great loyal friends [and] I didn’t want to have to have them deal with knowing that I was going through [heart failure], so I kept it hidden [for a while],” Landon said.

As it turned out, however, Landon didn’t need to prepare a goodbye.

At 1 a.m. on Oct. 29, 2023, the Howards received a call: Landon had gotten a heart.

“[I was] sleeping [when] my dad came in freaking out saying ‘Get up, get up, get up, you got a heart, you got a heart,’” Landon said.

As an eruption of excitement overtook the Howards’ home, all Landon could think about was preparing for the surgery. 

Walking downstairs, he heated himself up a half pound of couscous and a bowl of ramen and sat down at the dinner table to eat, knowing that that’d most likely be the last chance he’d get to eat before the transplant surgery. His mom and dad, on the other hand, were, as Landon described it, “freaking out in tears.”

The family scheduled a flight to Palo Alto, Oct. 29, to get the operation done at Stanford Hospital.

The entire operation lasted nearly two days, the surgeons having to take a break somewhere in between, before beginning again at 1 a.m. Oct. 30. According to Landon, one of the doctors’ main concerns was whether or not his body would accept the new heart. Thankfully, it did, and Landon became officially HLHS-free that day. He stayed in Palo Alto to be monitored by doctors but was allowed to return home, Jan. 20.

During his time back, Landon’s been able to think a lot about his plans for the future. Having gone through the Make-A-Wish program in 2013, Landon has dedicated himself to supporting the program, becoming one of their kids ambassadors in 2014. Striving to help others in situations similar to theirs, Landon and his family have worked to raise money for patients who need to travel to get life-saving surgeries.

This year, Landon decided to add the organization Donate Life America, a non-profit that donates organs to people in need of transplants, to the list of causes he supports.

“I’ve always been on the side of [helping] out because it’s the right thing,” Landon said. “Because I’ve been given a second chance, my choice is to use it to help others.”