Heart Transplant: Alex and Jaymeson’s stories
Meet Alex and Jay
This summer, two families met up for hot pot and a catch-up. If you watched from the next table over, you’d guess the two teenagers mugging for the camera were cousins, maybe, or classmates. But Alex and Jaymeson (Jay) actually bonded over a very unique shared experience: They both received heart transplants at Children’s Mercy Kansas City in February 2024.
How “the stepbrothers” met
The local founder of the Congenital Heart Defects Family Association knew Jay and Alex were around the same age and waiting for hearts. In 2023, she asked their moms if they’d like to be connected; they did. Alex’s mom, Victoria, and Jay’s mom, Danielle, began messaging, as did Alex and Jay. They met in person for the first time in the ICU while they were both waiting for new hearts.
“I don’t know if either of them remembers it, because they were in very different states,” said Victoria (they don’t), “but Danielle and I remember it.”
As the families got to know one another, Victoria and Danielle noticed that Alex and Jay would have very similar responses to experiences, even when they weren’t together.
“We had a lot of the same things happen within a short amount of time,” said Alex. “We shared a lot of interesting things: We both really craved pickles and watermelon.”
“They had some of the same ridiculous reactions to things that other people wouldn’t,” said Victoria. It reminded their families of the “not really appropriate” movie Step Brothers, where Will Farrell and John C. Reilly play feuding — and very funny — adult stepbrothers who eventually become fast friends.
“We could see them doing karate in the garage!” laughed Victoria, quoting the film. The nickname stuck, and the boys became known as “the stepbrothers” as they both awaited transplant.
“If one did something, the other was about to do it, too: Get ready!” said Danielle. “It’s been good for us to be able to go through it together.”
The families supported each other during their hospital stays and appointments. “I would stand outside of Alex's door and talk to him and wave,” said Jay. “And then when he did his walk, he’d do the same thing. That’s how we kept talking.”
“They are two extraordinary young men who have had more obstacles in their 16 years of life than most people,” said Beth Lang, RN, BSN, CCTC, Solid Organ Transplant Coordinator, Ward Family Heart Center and Brendan Tripp Elam Transplant Center. “And I can only imagine how reassuring it must be to find somebody out there who is going through the same thing. I think it’s been a part of their motivation and success.”
Rare congenital heart differences
Both Alex and Jaymeson were born with rare congenital heart differences that made it difficult for their bodies to get enough oxygenated blood.
Alex had an L transposition. His heart’s arteries and pumping chambers were reversed, and the smaller right ventricle was struggling to pump blood to the entire body. As a baby, he had a pulmonary artery banding at Children’s Mercy then a double switch procedure and pacemaker implantation at a hospital in Michigan that specializes in that surgery. As he grew, Alex needed heart valve surgeries and a new pacemaker.
“He continued to have heart failure symptoms,” said Victoria, despite these interventions.
Jay had a D transposition of the great arteries. His arteries were reversed, so oxygenated blood from the lungs went right back to the lungs instead of to the rest of his body. Jay’s particular artery placement made an arterial switch surgery too risky, so surgeons rerouted the top chambers of his heart instead. That meant his smaller right ventricle was working overtime to get blood to the rest of his body.
“The older he got, the harder it was for his heart to keep up,” said Danielle.
New hearts needed
Jay’s condition hit a crisis point in July 2023. After several bouts of congestive heart failure, Jay came into the cardiac catheterization (cath) lab to have a MEMS (microelectromechanical systems) sensor implanted to monitor his heart. But his heart arrested before they could start the procedure.
“I want to give the biggest shoutout in the world to Dr. Huffman,” said Danielle, praising Joseph Huffman, MD, FASA, Director of Cardiac Anesthesiology. “He got him back. He saved him. Thank God they ordered the cath; his heart was worse than we knew.”
Once he recovered, Jay went home with a PICC line to deliver medicine straight to his heart. He officially went on the heart transplant list that November.
Alex’s crisis also began in July 2023 but without as many warning signs. On the 4th of July, he started having trouble breathing. They went to their local emergency room, where Alex was life-flighted to Children’s Mercy.
Alex went on extracorporeal membrane oxygenation (ECMO) for 10 days to support his heart and lungs until he was stable. He then had a ventricular assist device (VAD) implanted to sustain his heart until he could get a transplant. Once he was strong enough, Alex went on the transplant list, and his family moved into a rented home close to Children’s Mercy for his many appointments.
Alex leads the way...
There are so many factors that go into donor organ matching and list order. It was impossible to predict if and when either of the stepbrothers would receive the right offer. Then, one day, it happened.
“Our family is half Chinese. When we got The Call, we were at home preparing food for Chinese New Year,” said Victoria, “and then Beth calls and says: ‘You need to come to the hospital!’ I told people to go to my house and take the chicken out of my fridge!”
Alex’s transplant started late on February 10 and ended on the 11th.
When Alex got his heart before Jay, the team wanted to be sensitive to how stressful it can be to watch someone else get the thing you’re waiting for. When Alex was admitted for his transplant, he was right next door to Jay, but afterward, they moved him to the other side of the CICU.
“The transplant team was just trying to make both of our families as comfortable as possible and worried it would make it more stressful being next door to each other,” said Danielle. “But it was the exact opposite: We just would walk back and forth to the rooms to visit!”
Team Jay showed up full force to celebrate Alex’s big day, bringing food and supporting Alex’s family as they waited through the surgery (a favor they would return very soon).
“It was just pure support and love and happiness and really amazing to see,” said Beth.
...with Jay close behind
Jay had been having a rough winter. He felt terrible and was having a hard time eating enough, so he came back to the hospital that January for support while they waited for a heart. He spent his 16th birthday in the ICU.
“I kept telling the team the whole time: The heart will come on Valentine’s Day,” said Danielle. Jay’s care team was headed to a conference out-of-state on February 13. Danielle joked with them: “See you tomorrow!”
Sure enough, on the afternoon of February 14, Danielle got a call from Beth. “She said, ‘Happy Valentine’s Day! We have a heart. Dr. Gibson is already on his way back!’”
While William Gibson, DO, cardiothoracic surgeon, went to get the heart, Edo Bedzra, MD, MBA, congenital cardiac surgeon, prepped for the transplant surgery. Dr. Huffman talked through the anesthesiology plan with Danielle and stayed late to let the family know when Jay was safely asleep and ready for transplant. “They took a lot of extra steps to help us be comfortable,” said Danielle of the transplant team.
Jay got his new heart on February 16, just five days after Alex. And Team Alex showed up, too, bringing Jay’s family food as they waited for surgery updates.
“We were just leaning on each other,” said Danielle. “It was very nice to have the extra support and someone who knew literally what you’re going through.”
“It’s like catching lightning in a bottle when it comes to transplants,” said David Sutcliffe, MD, Director of Heart Transplant and Ventricular Assistant Device, Heart Center. “It’s uncommon to have such closely spaced transplants as these two.”
Keep going!
Both Jay and Alex had very positive one-year follow-up exams and are settling into life with their new hearts.
The "stepbrothers” love driving. Alex got his driver’s permit only five days after being discharged and got his license this year. Jay also got his license as soon as possible after being discharged. They both say just driving around is one of their favorite activities, but they also each have increasingly busy schedules. Alex started a printing business, making t-shirts and tumblers for family and friends. Jay was drum major for his drum line this year and joined his school’s new boys volleyball team.
“Our babies are actually living for the first time in their lives,” said Danielle.
The boys stay in touch over social media, and their moms still message almost every day. They all say their friendship helped them get through a very difficult time and encourage other families to embrace opportunities for connection.
“Try to find a group or another family to connect with,” said Danielle. “And if you have trouble talking about the hard stuff, then just do some texting.”
“Our team has a lot of support mechanisms to help families, but none of us have ever gone through transplantation ourselves,” said Dr. Sutcliffe. “This was a unique circumstance in that they were experiencing the waiting and transplant and recovery together in lockstep. It was such a cool support system.”
“Use your communities and try to build a support group,” agreed Alex’s dad, Thomas. “It’s a long road, but it pays off.”
Victoria also tells other parents that it’s OK to advocate for your family. “I made sure that I was there for medical rounds,” she said. “No one got upset when I asked questions or for peer-reviewed studies about what was happening. Children’s Mercy is a safe place to be an advocate for your child.”
Alex and Jay’s advice for other heart transplant patients is to persevere.
“Everyone has their own time, and they just need to keep their head up and look forward to what is going to come,” said Alex. “It might be a bad situation now, but they’re going to be better soon.”
“Just be patient,” said Jay. “It’s going to happen. Don’t worry. Don’t give up. Keep going.”