Gavin Motzko seems like a normal Eden Prairie 3-year-old. And like a normal 3-year-old, he is probably just beginning to register his first memories.
His parents are just glad he doesn’t remember how he got the 5-inch scar that runs up his chest,but they have told him the story.
“He’s figuring things out that he’s not like everybody else,” said Gavin’s mother, Sara Motzko.
This April 9 will mark three years since the heart of another boy saved Gavin’s life.
Gavin was a quiet baby, and at first, his parents thought it was as simple as that. But Gavin went from being a quiet boy to maybe suffering from asthma. That wasn’t the issue, either. Maybe it was a floppy voice box, the doctors thought. Again, that was not the case.
Eventually the boy could no longer sit up. He couldn’t eat like he used to, either.
Doctors x-rayed Gavin’s chest to check for pneumonia when they discovered the root of his ailments: an enlarged heart.
“He might be able to live without a transplant,” the doctor said.
“And we were like, ‘What?’ It was shocking,” Sara said.
Gavin’s condition worsened and “might” became more and more unlikely. The Motzkos visited Mayo Clinic, where doctors told them Gavin would not make it to his fifth birthday without a new heart.
Even then, a fifth birthday became a big question mark. The ten-month-old was on the brink.
“His lung had collapsed. His body was shutting down,” his mother said.
Gavin, now in a medically induced coma, was hooked to a network of clear plastic tubes and an array machines to keep him alive – one for his breathing, one to monitor his heart, one to deliver food and another to track his oxygen levels.
He was already on a list to receive a heart transplant when his worsening condition increased his priority level. Instead of being eligible for hearts coming from within 500 miles, the search had expanded nationwide.
Then, the morning after things were at their bleakest, Sara woke up to the news that Gavin’s failing heart had a match.
Sara thought she would be overjoyed by the news, but that feeling was tempered.
“I just started crying and crying and crying,” she remembers, “because at that moment, you realize somebody’s baby had just died.”
Gavin’s life was saved when another boy, somewhere on the East Coast, drowned. They think about that “all the time,” Sara said.
“It’s kind of hard not to,” said Gavin’s father, Shannon Motzko.
Gavin has some idea of what he went through.
“He realizes that they had to fly a plane to deliver the heart,” his mother said, “and that he was so sick because his heart wasn’t working anymore.”
He is just now beginning to realize that his condition is not normal, though. Gavin has compiled an extensive list of food allergies since the transplant. Oranges, mangos, beans and tomatoes are all on the list of about 15 prohibited items.
Gavin asks his mother, “Am I ever going to be able to eat like Daddy?”
He has also asked why his baby sister, Catelyn, doesn’t take her medicine.
Gavin is expected to need three medications for the rest of his life to ensure his body doesn’t reject the heart. Because of his medical needs, Shannon quit his job at an audio equipment manufacturer to be a stay-at-home dad, and now working evenings as a cook while Sara works days as a legal assistant.
The doctors told the Motzkos that Gavin’s condition would cost them $100,000, money they would have to raise themselves had the Children’s Organ Transplant Association (COTA) not come into play.
COTA helped the family organize to raise $60,000 so far, a portion of which the charity matched. The family was successful enough that they are no longer actively fundraising, but COTA still has a web page set up where well-wishers can donate to Gavin’s fund for ongoing expenses.
Meanwhile, insurance has covered most of the massive medical bills.
“Trust me,” Sara said. “Over a million dollars has already been spent on this boy.”
Considering how dire Gavin’s health was, the Motzkos acknowledge that things could only have gotten better. In the nearly three years since the transplant, the boy has reached the level of care he will require, more or less, for the rest of his life.
Gavin’s parents have tried to give their son a normal life as much as possible. He is enrolled in preschool, but it is still clear he needs special attention.
Because he takes drugs to suppress his immune system and keep his body from rejecting the transplanted heart, germs are a special danger. He cannot play in the sandbox, said Sara, acknowledging that her son will likely miss his share of school days as he grows up.
He will also likely need a kidney transplant, the doctors say. So things are not exactly “smooth sailing,” Shannon allowed.
But at the same time, his father said “you’d have no idea” Gavin had a medical condition.
“He’s doing really good, yeah,” Sara said.
Good enough to enjoy a two birthdays a year: one for the day he emerged from his mother’s womb and another for the day he received the gift of a lifetime which beats under his wired-shut rib cage.
The Motzkos do not know the name of the boy to whom Gavin’s heart originally belonged, but they have written the family to express their bittersweet gratitude for the sacrifice. They haven’t heard back yet, but plan to write again.
Before the transplant, Gavin’s parents themselves made the gut-wrenching provision to donate Gavin’s organs in the worst-case scenario.
Now, instead, the Motzkos mark the anniversary of Gavin’s rebirth with all the trappings of a regular birthday party.
“We just have our relatives over,” Sara said. Have cake and ice cream.”
Gavin’s COTA profile can be found at bit.ly/gavinmotzko, where donations are accepted.