Like many savvy suburbanites, 3-year-old Calvin Hummel is quite taken with the shadowy twists and turns of Lower Wacker Drive.
“Where does the ‘big tunnel' go?” his parents ask.
Calvin, who is small for his age because of a yearlong struggle with kidney failure, shakes his head at each suggested answer: No, the big tunnel does not go to the police station, to the firehouse or to school.
His dad, Garrett, tries one more time: “Where does the big tunnel go?”
Never miss a local story.
“To the hospital,” Calvin says triumphantly.
Calvin, whose kidneys failed two years ago because of a rare genetic mutation, has spent more time in the hospital than most adults, including 11 consecutive weeks during one particularly bad stretch in 2015. But the North Aurora, Ill., preschooler is healthy, active and gaining weight like a champ, thanks in no small part to a kidney donation from his dad.
“It’s a weird feeling but a good one,” to think of your left kidney working in your child’s body, said Garrett, 32.
“I remember when one of our friends who donated (a kidney) said, ‘I always wanted to save a life' – that was one of her bucket list goals. And to be honest, that never occurred to me; to me, it was kind of the required thing – it was just something that you’re doing for your kid. But I guess I can join the club of ‘I’ve saved a life.’ That’s kind of cool.”
It’s rare for a child as young as Calvin to need a kidney and even rarer for one to receive one from a parent. In 2016 Calvin was one of only 36 U.S. children under age 5 to receive a kidney donated by a parent, according to data from the United Network for Organ Sharing.
That’s down from 66 such parent-child transplants in 2006 and 95 in 2001.
Among the possible explanations for the decrease: Parents are having children later, and health problems such as high blood pressure are starting earlier. Those factors may be making it more difficult for parents to get cleared as transplant donors, according to Dr. Amy Bobrowski, the medical director of the Kidney Transplant Program at Lurie Children’s Hospital in Chicago.
Calvin was a seemingly healthy baby, and his parents were expecting a routine local emergency room visit when, at 10 months old, he caught a virus and stopped eating and producing wet diapers.
Instead, doctors said he was having kidney problems, and an ambulance transported the Hummels directly to Lurie Children’s Hospital, where Calvin would spend the next week.
“It was a shock; it really was,” said Calvin’s mom, Heidi.
Calvin had infantile nephrotic syndrome as a result of a new mutation on his WT1 gene, a mutation that was not carried by either parent. He would need a kidney transplant, his parents were told, although not immediately. At that point, his kidneys were still functioning at 60 or 70 percent.
Within about two months, his kidneys failed completely, and he embarked on an 11-week hospital stay.
“It was horrendous. Lots of complications. Multiple surgeries. And he needed immediate kidney dialysis,” Heidi said.
Before dialysis – when he was retaining fluid due to kidney failure – Calvin’s eyes puffed up almost to the point that they couldn’t open. His lips looked as if they’d been stung by bees.
“He hardly had ankles,” said Heidi. “Like, I don’t know how his skin stretched as far as it did. His feet were sooo puffy. He looked like the Michelin Man.”
Over the course of a year, Calvin went through more than 500 hours of dialysis, in which a machine does the work of your kidneys, cleansing your blood.
Both of his parents were willing to be kidney donors: “When it’s your kid, you'll do anything for them,” Heidi said.
But the Hummels decided Garrett was the logical first choice to be tested for compatibility. They knew they wanted another baby soon, and they didn’t want to have to wait for transplant surgery and recovery for Heidi, which could easily have taken a year.
Garrett and Calvin were a good match, and surgery went smoothly – so smoothly, in fact, that Calvin left the hospital earlier than expected.
Garrett got through the painful cramps of early recovery, and his one remaining kidney adjusted to doing the work of two. Within a year, he said, he felt pretty much as good as new.
Wiry and intense, with a buzz cut and dark eyes that look a lot like Calvin’s, Garrett is an affectionate dad, calling his older son “bud” and proudly telling stories that reflect Calvin’s curiosity, intelligence and capacity for mischief. But he gently deflects questions about Calvin’s ordeal and his role in the resolution, saying that time was really painful.
“I know people say, ‘Enjoy the days – they go fast,' but that wasn’t going very fast,” he said.
“It’s almost like, ‘Let’s just get through this. We'll have days to enjoy eventually, but right now let’s recognize that this is not fun; it’s not good.’ I sometimes have a hard time remembering certain details, because, to be honest, I don’t want to remember it.”
Today, Calvin, who grew 6 inches in the year after his transplant, is making up for lost time.
“He’s doing great. He’s really thriving,” said Bobrowski, who is his kidney doctor. “The kidney itself is working great. He’s doing really well – you really can’t ask for more. They’re obviously a very good family and take awesome care of him, so that helps.”
Transplanted kidneys last 10 to 12 years on average, she said, but in the case of young recipients and living donors, they can last significantly longer. If Calvin’s kidney fails, he could get another transplant.
The hope at this point, Bobrowski said, is that kids like Calvin will live close to a normal lifespan. But doctors will need more data before they can be sure of that.
Calvin, who has to take medication and still gets his nutrition through a feeding tube, has to be careful about contact sports, but he can run and jump and play, go to school, and make age-appropriate mischief.
That’s what he and his little brother Henry, 14 months, were up to during a recent visit to the Hummels’ cream and frost-white living room, pristine but for an array of brightly colored toys and play stations.
Calvin, who has blond bird-fluff hair and a tendency to wrinkle his brow and raise his left eyebrow when he’s thinking hard, showed off his impressive spelling skills (he almost got water, missing only the w) and his excellent manners: “Bye-bye! Thank you for visiting me.”