The most vivid memory Tyler has of his son Maddox’s time at Phoenix Children’s Center for Heart Care is the smiling faces. From the moment Maddox arrived at the hospital via ambulance after his emergency diagnosis, all of the nurses, therapists and other caregivers were always smiling and helping Tyler and his wife Meghan feel at ease. “We call them our Phoenix Children’s family,” Tyler said.
And, like a family, those same caregivers were there for the Maddox's family during their darkest days – when they had to say goodbye to their beloved son at age 5.
It’s been just nine months since his family lost Maddox on May 19, 2022. They grieve for him every day, but they also appreciate the opportunity to share his story and support organizations that help children with congenital heart disease, like Phoenix Children’s. “It makes me proud that we had Maddox to bring us into this world of heart warriors,” Tyler shared.
A scary start
Meghan’s pregnancy with Maddox was picture-perfect – the anatomy scan at 20 weeks’ gestation didn’t reveal any heart abnormalities. It wasn’t until he was born that she and Tyler noticed his coloring was off and he was making strange noises. Doctors performed an echocardiogram – also called an echo – and discovered he had hypoplastic left heart syndrome (HLHS), a birth defect that affects normal blood flow through the heart. Children with HLHS only have half of a functioning heart. “The nurses at the hospital where he was born just kind of hugged us and said, ‘We have to send him to Phoenix Children’s,’” remembered Meghan.
Meghan rode in the ambulance with Maddox while Tyler followed close behind. Phoenix Children’s heart team met Maddox when he arrived, and his parents numbly watched as they began the process of giving the newborn the care he needed.
Over the next few days, the his family learned that Maddox would have to undergo three different open-heart surgeries over the next few months to repair the left part of his heart, which was unable to work well enough to pump blood the way it should.
For the first year of his life, Maddox was in and out of the hospital as he underwent his first two surgeries. His body didn’t respond to the procedures the way doctors had hoped, and they eventually determined he was in heart failure and would need a heart transplant to fully recover. “He was very, very tired all the time,” shared his mom. “He didn’t want to do anything as a baby.”
A new chance at life
When Maddox’s health became worse, he was admitted to Phoenix Children’s, and he was bumped to the top of the wait list for a new heart. Miraculously, he didn’t have to wait long – he was 17 months old when the they learned a heart had become available for him. He received his transplant on Sept. 29, 2018, and it was exactly what he needed.
Maddox’s new heart was a perfect match for him. He recovered more quickly from that surgery than he had his previous two procedures, and he started hitting all the milestones a healthy 1½-year-old boy would achieve. “Everything was amazing for him,” remembered Meghan.
Maddox loved playing with his three older brothers, and he was proud of the fact that he was a heart warrior. At the beach, he showed off the scar from his transplant and called his transplanted organ his “angel heart.” “He was just the happiest boy in the world,” Meghan continued. “He loved every single person he came into contact with.”
At the beginning of April 2022, Maddox came to Phoenix Children’s for his annual heart catheterization. At first, doctors were worried his body was rejecting the new organ, but all his tests came back normal, so he returned home with a clean bill of health and prepared to start kindergarten in the fall.
His parents’ relief was short-lived, however.
About a month later, Maddox woke from a nap, not feeling well, and his coloring was blue. His parents called 911, but as he was en route to the hospital in an ambulance, he passed away. His parents were devastated.
They later learned that Maddox had likely died due to complications of being immunosuppressed. “We’ll never know what really happened inside his body,” Tyler shared. “We felt like he was taken from us.”
A little boy’s legacy
Maddox's family commemorated American Heart Month by participating in a HopeKids event at Reid Park Zoo in Tucson, Arizona. HopeKids is an organization that provides support for families who have a child with a life-threatening condition. They had been participating in its events for several years before losing Maddox. At the zoo event, they and their four living sons (Maddox’s younger brother and three older brothers) wore matching red shirts and took photos of themselves with Maddox’s picture to post on their Facebook page, Maddox’s Miracle.
The little boy who loved pizza is never far from their minds. His family remain in contact with some of the doctors and nurses who cared for Maddox. They fondly remember heart surgeon Daniel Velez, MD, who was there for them at some of the scariest moments when Maddox was still a newborn. “Having to hand your child off to a team of people is the scariest thing,” Meghan remembered. “Dr. Velez told us he would care for Maddox as if he were one of his own children.”
These days, it’s difficult for Tyler and Meghan to talk about their little boy without choking up. Everything they do reminds them of him – whenever they stay in a hotel, they remember how much he loved traveling, and doughnuts remind them how Maddox requested the pastries every time he had his blood drawn.
They find ways to keep him in their life. At Christmas, they encouraged family and friends to change their social media profile pictures to Maddox’s Christmas photo so they could “see Maddox all over Facebook.” And periodically, they post videos of some of his cutest moments to share with those who follow their Facebook page.
“We have such compassion for all of the families that have a child with a congenital heart disease,” shared Tyler. “We lost our son, but we still believe that awareness and organ donation are incredibly important, and we want the world to know who Maddox was.”
