Landyn Berends was playing one-on-one basketball with a friend in the school gym when he stopped midcourt and stood strangely still.
Surprised, his friend turned around to see if anything was wrong – only to watch in shock as 12-year-old Landyn fell unconscious to the floor.
Landyn’s heart had stopped. Revived minutes later by a school secretary with CPR training, Landyn was rushed to a local hospital in Marshall, Minn. It was the first of three hospitals Landyn’s family would visit that day – Nov. 15, 2019. From Marshall, Landyn was transferred to a facility in Sioux Falls, S.D. There, doctors diagnosed him with hypertrophic cardiomyopathy. Within hours, Landyn and his family boarded a medical flight to M Health Fairview University of Minnesota Masonic Children’s Hospital.
“The first thing we said to the doctor Sioux Falls was ‘Is he going to die? Is this something that is curable?’” Landyn’s mother Jenni Berends recalled. “They said, ‘You need to go to the U of M.’”
Often called a “silent killer,” hypertrophic cardiomyopathy occurs when the heart muscle becomes enlarged, making it progressively more difficult for the heart to pump blood throughout the body. In children like Landyn, the condition is rare and is often congenital, which means that it can be passed down from parent to child.
The disease frequently goes undetected until sudden cardiac arrest occurs. Arrest can be triggered by strenuous activities, such as Landyn’s game of pick-up basketball.
“He had been a healthy for his whole life, right up until I’m getting a phone call that he collapsed,” Jenni said. “Landyn was lucky he had somebody there who knew what to do and saved his life.”
“Bystander CPR makes a difference. If the school staff didn’t respond effectively to Landyn’s collapse he wouldn’t be here with us,” Ameduri said.
When Landyn and his parents arrived at the Pediatric Heart Center at M Health University of Minnesota Masonic Children’s Hospital, Ameduri and a team of specialists took over. To determine the cause of Landyn’s cardiomyopathy, the team conducted a series of tests, including a heart catheterization. During the catheterization, specialists inserted a catheter through Landyn’s blood vessels and into his heart. By measuring pressures and taking photos, they were able to examine his heart from the inside, searching for heart valve defects or other issues that could be surgically corrected. They didn’t find anything.
To prevent Landyn’s heart from having potentially fatal irregular rhythms, the team inserted an implantable defibrillator into his chest. Despite careful monitoring and medication, Landyn’s heart condition continued to worsen in the days and weeks following the incident and his hospitalization. Unable to identify a cause or a correctable defect, Ameduri and Pediatric Cardiothoracic Surgeon Massimo Griselli, MD, began to consider another option: a heart transplant.
Before proceeding with a transplant, Ameduri and Griselli consulted with multi-disciplinary specialists across the M Health Fairview system. They also sought second opinions from pediatric heart experts nationally and internationally. Everyone was in agreement; a heart transplant was Landyn’s best shot.
“That’s very reassuring knowing that the people who do this every day were all saying that a heart transplant was his best option,” Jenni said. “If they didn’t do the transplant, he couldn’t ever go out for recess in school or play in the gym. We’d always be worried that his heart would rev up and he might collapse again.”
On Dec. 10, Landyn’s name was added to the heart transplant waiting list. As his condition continued to worsen, doctors grew concerned that he might suffer another heart episode. In response, they raised his priority status on the waiting list.
On Jan. 22, 2020, a matching donor heart became available. Landyn and his family rushed from their home in tiny Wood Lake, Minn., to the hospital. At 6:30 p.m., Landyn went into surgery. Four hours later, Massimo Griselli successfully completed the surgery.
Landyn’s procedure was one of five pediatric heart transplants conducted during a 21-day span in January. The number is a record for the Heart Center, which typically performs 5-10 pediatric heart transplants annually. Griselli and Ameduri say the program’s growth is a testament to the skill and experience of the Heart Center team.
Six hours after transplant, Jenni and her husband Dustin were allowed into the room to see Landyn.
“I walked into the room and I said ‘Hi, buddy,’ not thinking that he’s going to be awake. Not thinking he would say anything to me,” Jenni said. “He opened his eyes and he looked at me and said ‘Hi, mom.’ Those were the best words I’ve ever heard.”
Months after the transplant, Landyn continues to recover. Though he’s not yet able to shoot hoops with his friends or exercise, his outlook is bright. Jenni and Dustin are already planning a Make-A-Wish fishing trip with Landyn in Alaska next year.
“There are no words to thank Dr. Griselli and Dr. Ameduri for everything they have done for our family,” Jenni said. “They gave us our son’s life back. How do you thank someone for that?”