Spring Break 2022 wasn’t awesome for 17-year-old TJ. While in South Dakota visiting his extended family, he started experiencing bad cold symptoms and a thick cough. He came home to Minneapolis early and his mom Aleshia suspected TJ had COVID-19. She was preparing to take him to the doctor but when he stood up, his torso was extremely bloated. “He looked almost pregnant,” said Aleshia. “We thought he was having an allergic reaction to something he ate.”
Diagnosis
TJ’s stepdad took him to the nearby emergency room where it was determined he had a lot of fluid around his heart. Doctors immediately transferred TJ to Children’s Minnesota.
Understandably, this fast sequence of events was upsetting for TJ’s close-knit family. TJ has a twin sister and is the oldest boy of eight kids. Aleshia was aware of her own heart issue and knew she has a gene that could be hereditary to her kids.
After an extensive series of genetic tests in March and April, doctors determined TJ has two genes that are associated with cardiomyopathy, a disease of the heart muscle. TJ was diagnosed with restrictive cardiomyopathy, a rare condition, especially in kids, where an inflexible heart muscle does not allow blood to fill the pumping chambers normally between heartbeats.
“He looked good from the outside, but he would fall asleep because his heart was failing. Doctors said the only way he could heal was with a [heart] transplant,” remembered Aleshia.
Ventricular assist device
In late May, TJ’s care team determined he needed a ventricular assist device (VAD) to assist his weakened heart while awaiting a new heart. The VAD, otherwise known as a heart pump, helps increase blood circulation throughout the body. TJ was discharged with the VAD on July 5 and continued his waiting at home.
“Seeing my son go through what he was going through and then bringing him home – it was almost like bringing a newborn home from the hospital. I never took my eyes off him,” said Aleshia.
Heart transplant
Fortunately, TJ and his family didn’t have to wait at home for long. Three days later on July 8, Aleshia got the call. “I got the phone call that they had a heart,” said Aleshia. “Everyone in the neighborhood heard me; everyone came out hugging us and crying. Then we packed up and went back to the hospital.”
TJ’s heart transplant surgery was the next day on July 9 and his family was excited this day finally arrived. “They came to get him and I said, ‘we’re ready!’” said Aleshia. “TJ threw up the peace sign, put on the headphones and went into the surgery room.”
The surgery was successful and TJ’s recovery has been going well. He was discharged and back at home with his family 10 days later.
“TJ’s case took multiple planning meetings with multiple groups as the ventricular assist device (VAD) had not been implanted in this fashion before. The steadiness of Aleisha guided TJ through this challenging problem. It was a privilege to have the family trust our program with their care,” said Dr. Robroy MacIver, congenital heart surgeon and surgical director of the Heart Failure and Heart Transplant program.
TJ’s goals for the future
Aleshia credits TJ’s entire care team for the excellent outcome. “God designs those people. [They’re] angels in the operating room,” said Aleshia. “Every person in that room is vital; the whole team was phenomenal. I can’t thank them enough.” TJ got to go home on July 19 and continues to do well.
“The storm is over now. He has a new heart and we just pray that everything is okay from here on out,” said Aleshia. “You’re in the best hands [with the Children’s Minnesota cardiovascular team]. I trusted them and I agreed with what they were saying… They were my life jacket.”
TJ says he feels great and looks forward to when he can get back to activities he enjoys – skateboarding and running. He’s excited to his senior year of high school, but will likely have to wait a few months before he can go back to the classroom. He loves producing his own music and wants to study music in college. He also wants to use his voice to help other patients and families navigate the challenges of serious illnesses.
First pitch experience
Less than two months after his heart transplant surgery, TJ and his family received a very special experience. He threw out the first pitch at the Minnesota Twins game at Target Field on August 30. The experience was made possible by Papa John’s Twin Cities.
The cardiovascular program at Children’s Minnesota
Children’s Minnesota’s cardiovascular program cares for more pediatric heart patients than any other program in the state. The program consistently achieves heart treatment outcomes that are among the best in the nation. Each year, care is provided for thousands of the region¹s sickest children with heart conditions, from fetuses and newborns to teens and long-term adult patients with pediatric cardiovascular conditions.