Sometimes “heart” can mean something other than that vital organ that keeps one alive.
Four-year-old Jace Connor, who was diagnosed soon after birth with a rare heart condition and is currently on a transplant list, was able to see “Toy Story 5” with the help of a new medication, along with the love and dedication of the cardiology team at Arthur M. Blank Hospital.
The diagnosis
Two days after Jace was born, his mom, Katie, was informed that he had a heart murmur, something that couldn’t have been detected in vitro. After extensive testing, it was found that Jace is suffering from left ventricular noncompaction cardiomyopathy (LVMC), a rare heart condition where the lower left heart chamber develops an abnormal muscle wall with deep grooves instead of a smooth, firm surface.
The diagnosis started a long cycle of catheterization procedures, back-and-forth stays between the CICU and the cardiac acute care unit (CACU), and ultimately Jace being added to the transplant list three years ago, according to his medical team. He’s had two potential matches that ultimately didn’t come to fruition – one because his health wasn’t good enough to undergo the procedure and the second because it was determined not to be a good match.
“He was in the hospital for the first month,” Katie said. “And then we’ve pretty much been in and out of the hospital since he was born, and we’ve been preparing for the worst. With his condition, it’s either that the medicine works, or it doesn’t.”
A wish come true
During his most recent inpatient stay at Arthur M. Blank Hospital in Brookhaven, Jace told the staff that he was hoping to see his favorite characters Woody and Buzz in the new “Toy Story 5” movie.
Having been in the hospital for half of his life, Jace watched a lot of movies, with the “Toy Story” series sparking his obsession with the main characters, Woody and Buzz. It was his wish to see the new movie in person, rather than from his hospital bed.
“It was bittersweet because we didn’t know if he was gonna come home or not,” Katie said. “He would talk with the nurses and the staff about how he was going to go see the movie, and I didn’t know how I was gonna break it to him that he might not be able to see it for a little bit.”
However, his medical team, led by Dr. Chad Mao, prescribed a new medicine called Sildenafil, which works by relaxing blood vessels to increase blood flow. It allowed Jace to return to his home and ultimately see “Toy Story 5” with his mom and best friend, Lily.
Katie said Jace showed his love of both characters during his outing, toting a Buzz bag containing his medicines, wearing a Woody shirt, and mixing it up with a Woody Croc on one foot and a Buzz Croc on the other.
“We thought he would be antsy, but he was still during the entire movie and, when it was over, said he loved it,” Katie said.
‘Trying to be a superhero’
Because of his condition and his medication regimen, Jace is unable to be submerged in water or engage in many typical activities associated with being a four-year-old boy. But his doctor and his mother say one would hardly know that Jace is in true heart failure.
“Jace is a delightful little boy who has a condition where his heart muscle has become weak and cannot pump blood adequately to support his body. He is currently on a continuous infusion of medications to help support him and keep him healthy until a heart transplant becomes available,” Mao said. “Despite the severity of his heart disease, he is always a happy and playful little boy who brings joy to everyone on the heart transplant team.”
Katie called Jace “a free spirit.”
“He’s always happy. With everything he’s gone through, he is still kind of fearless – a typical boy, trying to be a superhero and everything else.”
Katie said it’s a difficult balance, trying to give Jace a normal life while making sure that he stays healthy.
“It’s like a Catch-22,” she said. “We try to give him the best toddler life we can, but we also have to keep him healthy while waiting for the perfect heart. We are just praying for the call and that things don’t get worse. “
