What’s Gavin Brown’s favorite part about having his Dad as his baseball coach?
“I always have someone to talk to after practice if I need to,” he says, “and he can help me with extra stuff at home if I miss it at practice.”
This past winter, Gavin and his father, Matt, spent extended time away from the field together. They sat next to one another in matching recliners. They even slept in them.
As our kids seem to advance so rapidly in age, we might say in passing how we’d give anything for an uninterrupted period with them like this. For this father-son duo, the time together came after Matt Brown gave his kidney, which saved his son.
Matt and Gavin will be together at the Angels-Orioles game on Father’s Day in Baltimore, and they are playing with Calvert (Maryland) American Little League All-Stars this summer as they attempt to advance out of their state. It’s the shot about which every Little Leaguer can dream.
In the meantime, the Brown family, which has managed Gavin’s chronic kidney disease since birth, has been renewed with a successful transplant and recovery.
“We were completely shocked,” says Gavin’s mother, Erin. “He went from he can’t sit up to, ‘Holy Moly, he’s playing baseball,’ three months later.”
USA TODAY Sports spoke with Gavin and his parents, as well as Yi Shi, a pediatric nephrologist at Children’s National Hospital and a member of Gavin’s care team, about their journey.
“Gavin was extremely brave throughout the entire process,” Erin says. “Even up until the time he went back for surgery, he was confident and reassuring, making sure to tell me everything was going to be just fine. Gavin has known this was coming his entire life, and by the time it got here, he was very ready to just get it over with and try to get back to normal life.”
Their story also details the role sports can play in managing life’s obstacles, no matter how steep they are, and in bringing fathers and sons closer together.
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‘I just kept going with it’: How a parent makes a kidney transplant work
According to the latest data from the Organ Procurement and Transplantation Network (OPTN), there have been 8,082 pediatric transplants performed through parent-child kidney donations since 1988, when national stats were first recorded.
Erin and Matt knew pretty much from Day 1 Gavin would need a transplant. Matt got tested and cleared to be a donor seven or eight years ago, and they waited.
In the meantime, Matt began helping out with the coaching on Gavin’s baseball team. He put his son directly into kid pitch, skipping tee ball and coach pitch. Gavin has come into his own and become a local All-Star.
But during adolescence, which is a kid’s highest period of physical growth, doctors see the steepest drop in kidney function, Shi says. That moment for Gavin came last fall, when he was 11.
“It was still kind of positioned that it was going to be a little ways away,” Erin says. “And then we saw a drastic decline. And they made the determination that we were, most likely, going to do the transplant.”
Shi says children usually do better with a living donor, and parents or other family members are the best matches: “We try to get donors less than 40 [years old] for kids, but we work around if the parents are older, for whatever reason.”
Matt, 38, was within the usual age range but there was one particular problem. “Healthy weight is a requirement for donation,” Shi says.
He weighed 238 pounds last summer.
“It wasn’t until I got out of the military that I just got soaked up with working shift work, and then kind of let myself go for a number of years,” says Matt, who served in the Army from June 2004 to October 2009, including stints in Iraq and Afghanistan.
Matt, who now works in security at Calvert Cliffs Nuclear Power Plant, had to lose 15 to 20 pounds from his 5-foot-9 frame. He hit the number, “and I just kept going with it,” he says. Today, he’s down to 200.
Pediatric transplant surgeon Jennifer Verbesey and a surgical team started Matt’s kidney removal surgery around 7 a.m. Feb. 10 at Washington’s MedStar Georgetown University Hospital. Verbesey was with Gavin and Erin at Children’s National across town by 11:30 a.m. that day.
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It was five days after his 12th birthday and still, his mom says, Gavin was smiling right up until the time he went into surgery, which took 4 to 5 hours.
Doctors recommended staying out of school and avoiding large crowds for the first three months, when his immune system would be the most suppressed.
“The main part of the recovery process is really the post surgical recovery, which takes about a week or so,” Shi says. “Generally, kids feel quite good after that, so it’s not a prolonged recovery process. … It is common that children recover quickly and can return to full activity within a month.’
Gavin had swelling and some minor complications that were quickly resolved, Matt says, though they made everything a little more uncomfortable for him.
At first, neither one of them could even lie flat. Gavin had a lot of pain and, after he spent a week in the hospital, he and Matt spent about two weeks, off and on, in those reclining chairs.
“It was really just getting used to it and living with it for the most part,” Gavin says. “We went on walks a lot after we could and went outside in general. It was really just hard to get used to.”
But there was familiarity, first in spending time with dad, and then, after an isolation period together had ended, he moved to practice with his Little League team (the Orioles) in late May.
At first, the activity was about supporting his teammates and feeling like he was part of the group. Being with his friends is one of his favorite parts of baseball.
He learned the shifts and the plays, he tossed the ball softly, stretched a little and took in all the energy of practice.
“That way, when he’s ready, he can hop back in with the team,” Matt says. “You know, crawl before you walk and run.”
Shi says a transplant kidney is usually placed in the front of the belly and is less protected than our regular kidneys. They marked the spot and helped Gavin fashion a shirt, through Zoombang, that provides padding for it under his jersey.
There was a therapeutic function to playing baseball, too.
“It’s not like major league baseball, or at that level where we expect high-force injury,” Shi says. “In general, we advocate for kids to exercise, play sports, do what they otherwise would be doing. I think it’s better for quality of life and just general recovery, but kids in general, after transplant tend to gain weight, and so things like exercise really do help with blood pressure and the weight gain.
“On top of that, it’s something that he really likes doing so we try our best to accommodate.”
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Though he has been on medication since he was born, Gavin and his parents decided he is now responsible enough to manage the process on his own.
He takes an antibiotic (Bactrim), which he will stop at the six-month mark after his surgery. He also takes Tacrolimus and Cellcept, two anti-rejection medications that prevent the immune system from attacking transplanted kidneys.
Gavin takes medications at 9 a.m. and 9 p.m., excusing himself momentarily from our video interview last week to do so.
“Timing is very important, as keeping his body regulated with the anti-rejection medications is the best way to prolong the life of his new kidney,” Erin says. “We get notifications (through an app) if he hasn’t marked them off, which allows us to monitor him without having to do the medication administration for him. Our goal with allowing him to do this is to start preparing him to be independent and understand the importance of taking his meds on time, without micromanaging.
“We also put all his medications into daily containers with his help each week. He’s been great about remembering to take them when he leaves the house and taking them on time. We’re really proud of how well he is doing.”
There have been unexpected hurdles, though. Just recently, for example, his white blood cell count was low and he missed school.
“Just things we weren’t necessarily prepared for that we’re kind of learning along the way,” Erin says. “He seemed fine, but his blood work wasn’t showing fine, so we had to make adjustments.”
When he plays baseball, he has been instructed to not slide headfirst. He was there, though, when the Orioles won their Little League’s championship.
“He’s hitting the ball well,” Matt says, “just not as far as he used to, which he understands. And mobility is a little bit slower … (He’s) still not back 100% but he’s able to compete.”
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A point of emphasis for this season is recognizing not everyone on the team is at the same skill level.
“But we can always help people work to their strengths,” Erin says.
Gavin has an athletic stance. He puts the ball in play with a quick right-handed swing and sprints toward his dad urging him forward as a first base coach.
“Kidney donors should make a full recovery like any other surgery,” Shi says. “Matt has one kidney now compared to two, which means his one kidney has to work hard enough to take the place of two.”
He has helped his son avoid dialysis, a procedure that removes waste substances and fluid from blood that are normally eliminated by the kidneys.
“Dialysis generally has worse health outcomes than transplant, but also has worse quality of life,” Shi says. “Kids would either need to come to the hospital for dialysis three times a week or do dialysis at home every night. They have more dietary restrictions as well.”
Gavin will some day need another transplant. Shi says they last 10 to 15 years on average, sometimes longer.
Erin, who works in marketing for a software company, and Matt are hopeful that medical advances will give Gavin more options. Before his surgery, the family was introduced to the National Kidney Registry, a U.S.-based organization that aims to increase the quality, speed and number of living donor kidney transplants.
Transplant speed can increase when someone donates on behalf of a patient through programs like paired exchange or the voucher program.
Erin, 37, has had Type 1 Diabetes since 1999 and is automatically disqualified from being a donor.
“As a mom, this was very hard to accept,” she says.
She is looking forward to running a local 5K turkey trot with Gavin, and perhaps his younger brother, Connor, 11, on Thanksgiving. There could also be a winter family trip to Vermont to snowboard, which is Gavin’s other favorite sport and approved by Shi (if he wears his protective shirt).
In the more immediate future, there is lots of baseball.
“I just really enjoy it,” Matt says of coaching his son, “going out there and doing something he loves, just encouraging him, watching him grow.”
And to grow into someone who has learned to look to the future as an opportunity to seize what comes next.
“We spent time going through what the process would be like,” Erin says. “Gavin functions very well when he knows what to expect. Having a clear game plan for the day of surgery and a good idea what the post surgery recovery would look like was very comforting to him.”
Steve Borelli, aka Coach Steve, has been an editor and writer with USA TODAY since 1999. He spent 10 years coaching his two sons’ baseball and basketball teams. He and his wife, Colleen, are now sports parents for two high schoolers. His column is posted weekly. For his past columns, click here.