Patient Stories

A Perfect Match 

 

“He was a son, a brother, and a father. He was always a giving person, always cared for others. He lived life to the fullest. We as a family wish you the best. Live life to the max. Keep him in your prayers. We as a family would like to know about you one day when you get better. Know that our family member always wanted to help others. May God keep you safe.”

 

Tears welled in Scott’s eyes as he read the letter describing the man whose heart was now beating in his son Brett’s chest. 

“He had to lose his life for my son to live,” Scott says. “That letter represents a life lost – and a life saved.” 

It was a scenario that just four months earlier would have seemed implausible. In December Brett was a healthy teenager, completing his semester exams at Sunrise Mountain High School. He started to feel some tightness in his chest but it would always go away. Expecting to be told it was asthma, which runs in the family, Scott took Brett to the doctor. That’s when everything changed. 

“His resting heart rate was 140 beats per minute,” Scott recalls. “The doctor told us to get to Phoenix Children’s right away.”

Within an hour Brett was diagnosed with dilated cardiomyopathy. His heart had been attacked by a virus. He also received news that would forever change all of their lives. Brett would need a heart transplant. 

The Children’s Heart Center at Phoenix Children’s is home to the only pediatric heart transplant program in the state and boasts a 100% one-year survival rate.

“It was crushing,” Scott says. “All I could think was, ‘is he going to live?’”

Christmas passed and the family barely noticed as Brett’s conditioned deteriorated. It was clear that he wouldn’t make it to transplant without intervention. On December 30 Brett went underwent open heart surgery and was fitted with a left ventricular assist device (LVAD) – a mechanical pump that would do the work of his left ventricle while he awaited a new heart.

Although he had to celebrate his 16th birthday in the Hospital, his body was responding to the LVAD. He was doing so well that he became the first patient to leave Phoenix Children’s with the mechanism. 

“The device has typically been used in adults, but by implanting it in Brett, he was able to await his heart transplant at home,” says Dr. John Nigro, cardiothoracic surgical staff division and section chief.

Three ventricular assist devices were implanted in patients in 2013. The Children’s Heart Center has the only pediatric LVAD and total artificial heart program in the state.

Then the wait began. Life at home was hardly normal and it was too risky for Brett to return to school. All his dad and stepmom Carla could do was worry. 

“I slept on the floor outside his room every night,” Scott says. “I wanted to be close in case he needed me.” 

Weeks turned into months. The LVAD felt a little unnatural, but Brett was getting stronger. He was scheduled to be honored at a spring training baseball game on March 22 and was looking forward to finally getting out of the house. The family joked with Phoenix Children’s transplant coordinator, April Colon, that if a heart became available during the game she shouldn’t contact them until afterwards.

The call didn’t come during the game, and Brett had a great time spending the day with his family and three of his doctors from the Children’s Heart Center – Dr. Nigro, Dr. Stephen Pophal and Dr. Daniel Velez. 

It came that night. 

“April called around 11 p.m.,” Scott recalls. “She said they had a possible heart and that we should get some sleep – yeah right – and talk in the morning.” 

It was a long night. The family cried, hugged, talked about the possible transplant. 

“Now that it was happening it was really scary,” Brett recalls. “I felt so good on the LVAD that I wondered if I should even go through with the transplant, but I knew it was the best option to get me back to as much of a normal life as possible.” 

Around 4:30 the next morning Scott received a text message from April. The heart was a match. That afternoon Brett went into surgery. 

“Watching them take Brett back, I was relegated to a crying heap on the floor,” Scott says. “I was in the Air Force for 26 years and saw a lot of terrible things, but nothing prepared me for that.” 

After he knew the new heart was on its way, Dr. Nigro removed the LVAD and Brett’s heart.

“Coordinating removal of the damaged heart with transporting the donor heart allows us to get the new heart in sooner, increasing the chances of it working,” Dr. Nigro explains. 

Anxious for a distraction while Brett was in surgery, Scott and Carla headed down to the lobby to see if they could spot the car carrying his new heart. Little did they know it would pull up right in front of the hospital, and the recovery team, led by Dr. Velez, would carry the heart through the front door. 

“When they walked in with the cooler carrying his heart we just started crying,” Scott recalls. “We thought about the donor and how our son was getting a second chance.”

Brett received the 29th heart transplant at Phoenix Children’s since 2010.

The surgery lasted 10 agonizing hours. Scott and Carla were finally able to see Brett after midnight, and incredibly, by the next morning he was sitting up and talking. The family was so overcome with gratitude that they decided to write a letter to the donor’s family. It was a message of thanks, comfort and promise. They vowed that Brett would do great things and hoped the family would feel comfortable meeting him at some point. 

Scott sent the email to April, who forwarded it to the donor network. As she started going through the paperwork that had accompanied the heart, she found something she had never seen before – a photocopy of a handwritten letter. It was from the donor’s family.

As he read the letter, Scott was struck by how similar the donor was to Brett. 

“Brett has always been a giving person who cared for others more than himself,” Scott says. “The letter could have been written about him. That’s when we knew the heart was truly a perfect match.”

Just nine days after receiving his transplant, Brett walked out of the hospital, determined to honor his promise to make the most of his second chance. He’s focused on learning to drive and completing his junior year. After high school he plans to study radiology and work at Phoenix Children’s, a place he now calls his second home. 

Brett also hopes to raise awareness for the lifesaving impact of organ donation. As a reminder of the gift he was given, he hung the framed letter on his bedroom wall. “All I can say to my donor and his family is ‘thank you.’ When they’re ready, I hope they will come listen to his heart beating inside my chest.”

Scott shares the sentiment. “They’re part of our family now, whether they realize it or not.”

 

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