After a year on waiting list, MN teen gets heart transplant

Courage sometimes hides in small places. For the better part of six months, it’s been living in room 5-686 at St. Marys Hospital.  The name on the door and on the charts inside belongs to Aidden Tilly, a 14-year-old Minnesota boy with draining energy and endless hope.

This is the cardiac floor at the Mayo Clinic, a place where a team of medical superheroes that no Hollywood casting director could ever create, turn broken hearts into healing hearts.  Aidden Tilly was one of those with a broken heart.

"The left side of my heart is like, doesn’t, didn’t work," said Aidden from inside his room.  "Keeping up with everybody was a little more difficult."

Aidden was born with hypoplastic left heart syndrome, a condition where the left side of his heart did not fully develop leaving him with only one fully pumping chamber.

Aidden Tilly (FOX 9)

"He was critically ill when I first met him," said Dr. Rebecca Ameduri, a pediatric cardiologist with Mayo Clinic who first met Aidden after his birth.  "Ultimately, that right ventricle that they have is not meant to pump into the body and take over that workload.  And so, all children will eventually need a transplant."

Aidden had four heart surgeries to make repairs and buy time. But as he entered his teenage years, time started to run out and he was placed on the heart transplant waiting list in March of 2023.  In October, he moved into St. Marys Hospital where he could be closer to his medical team and wait for what he hoped would soon be a matching donor.

"There are over 2,200 people in the state of Minnesota who are waiting for a lifesaving organ transplant," said Susan Mau Larson on LifeSource, the organization directed by the federal government to manage organ donations in Minnesota, the Dakotas and northwestern Wisconsin.

"About one percent of individuals who die actually can be an organ donor," explained Larson about the need to die in a hospital where a patient has been kept on a ventilator to keep the main organs functioning and ready for donation.  It’s a small fraction of potential donors and a contributing factor as to why there is a shortage of donated organs. 

"That’s why it’s so important that we all say yes to donation, because people like Aidden are depending upon that generosity and that altruism and that gift of donation," said Larson.

Aidden Tilly in the hospital. (Supplied)

In Minnesota, there are several ways residents can become an organ donor. Perhaps the most popular way is to check to organ donor box when applying for or renewing a driver’s license with Driver Vehicle Services.  Minnesota was also one of the first states to place an organ donation option on hunting and fishing licenses.  But for those who have not committed to organ donation on their state-issued licenses, they can sign up with LifeSource on their website.

"When somebody registers to donate, whether it be online or on their driver's license, or the hunting and fishing license, that’s information that LifeSource has," explained Mau Larson.  "We’re able to access that at the time of donation and honor and fulfill those wishes."

For Aidden, someone said yes.

"March 21st, we got the call," said Aidden’s mother Natalie Barker with a grateful look on her face.  "They had a heart for him."

He was wheeled into the transplant operating room at Mayo Clinic where the surgical team implanted Aidden’s new heart.  The surgery took nearly 14 hours.

"He’s doing amazing," said Dr. Ameduri.  "Better than I could have anticipated."

Within days after his surgery, Aidden’s nurses gave him a stethoscope to listen to his new heart. Upon hearing the beat for the first time, he said no words.  But the expression on his face and in his eyes as captured on video recorded by his mother was all everyone needed to see.

Aidden Tilly with his doctors. (Supplied)

"There are no words that can describe the amount of gratitude," said his mother Natalie about the heart donor and their family.  "During their deepest, darkest hours, they said yes to organ donation and gave Aidden the opportunity to have a second chance at life.  There is nothing that we could ever say that will ever be enough."

As a cardiologist who works closely with the Mayo transplant team, Dr. Ameduri has seen the life and death wait play out many times.

"There is a risk that every day those patients that are on the wait list that they may not get an organ donor," said Ameduri.  "All we can say is that those families and those organ donors are heroes, and they give our children the chance to be a superhero in their own right."

Aidden’s post-transplant journey is now on a new path. Two weeks after his transplant, doctors allowed him to leave the hospital for the first time in six months.  The courage that resided in room 5-686 is now another testimonial to the gift of organ donation.

"We are now going to be able to see him grow up and do things he couldn’t do before," said Natalie.