On June 2, 2013, at 10:59 p.m., my sister Mekea Duffy posted this on Facebook: "In most ways, my decision to donate a kidney to Jack is simple. He is a sick little boy. I am a mother of three young girls. We live in the same neighborhood. I have a connection to his family. But most simply, and most importantly, I am able. I am a good match."
The seed for that decision had been planted back in January, when Mekea called in to the University of Minnesota Transplant Center to add her name to the living kidney donor pool for Jack Certain, a smiley, freckled first-grader whose mother, Ali, and little sister, Lucy, we’d recently gotten to know through a preschool program.
Jack’s kidneys had been trouble for him since he was in utero, and now the kidney that his mom had given him when he was 2 was failing. He had been diagnosed with stage 5 renal failure. He was so sick and nauseous that the first time Ali took him to meet pediatric nephrologist Dr. Priya Verghese at the U of M Amplatz Children’s Hospital, he threw up in her handbag while they were waiting.
Ali and Jack Certain with kidney donor Mekea Duffy
“Jack was in rough shape,” Verghese says.
Jack was put on dialysis, which does the work of your kidneys, siphoning off your blood, cleaning it of toxins and excess fluids, and then injecting it back into your body. “It made a huge difference in how he felt,” says Verghese. “But the issue is that with all children, being strapped to a machine four hours a day, for three to four days a week, is not easy—and it is not good for them. We’ve seen growth delays and cognitive impairments. This is why I feel an urgency to aggressively transplant all of our pediatric patients.”
Finding another kidney for Jack was going to be tough. While his dad, Harry, and other family members were willing donors, they were immunologically incompatible due to antibodies that had been built up because of the first transplant. The Certains would have to search outside the family for a willing living donor with the right blood type (Type O) and something much harder to find: no donor-specific antibody. This was a needle-in-a-haystack situation, the doctors told them. It could take months, years even.
In the meantime, Jack was pulled part-time from school and all extracurricular activities and hooked up to a dialysis machine. His favorite foods—pizza, peaches, avocados—were exchanged for a bland low-sodium, low-potassium, low-phosphorous diet, mainly consisting of white bread, white rice, and white tortillas. The rigors of dialysis are so brutal that the treatment has been grimly described as a kind of “death in life.” But Jack was taking it well. He charmed his medical team and visitors with jokes. Kids from school came over for revolving Saturday “playdates” during dialysis to keep his spirits up. Ali was amazed by the way his friends took it all in stride. “I thought, ‘Can these first-graders handle this, the cords and the blood?’ But it was life-changing,” she says. “We felt so supported.”
As the first-graders did their part, Jack’s story was circulating around the community. Two of Ali’s yoga students created a Facebook page, fellow yoga and fitness instructors brought the urgent need for a donor to the attention of their students, and the news passed from inbox to inbox. “We need help,” Ali wrote on the page, which reached more than 30,000 people. “We need a willing donor that has a blood type O to step forward.”
My sister, Mekea, recognized Ali from preschool when she bumped into her at a neighborhood nail salon. They were just two Minneapolis moms taking a break from the daily grind. As Ali shared tidbits of Jack’s story, Mekea became another person in the chain. And then she became something more.
In January 2013, she called me. “This is kind of crazy,” she said. “I found out I’m a type O, so I called in for Jack, and I have this weird feeling about it.”
After struggling with infertility, Ali and Harry Certain were thrilled when they found out Ali was pregnant—with twins. Jack and Sam entered the world on September 14, 2005, eight and a half weeks early. The Certains knew things would be rough for Jack. He had posterior ureteral valves, a condition in which the ureter tube valve is inverted, putting pressure on the kidneys and preventing urine from draining properly. “As Jack’s mama, I have never asked ‘why him?’ or ‘why us?’ I am very clear that Jack chose our family and that we have the capacity to navigate him and our family through this,” Ali wrote on Facebook. But nothing could have prepared Ali and Harry for the road ahead.
Jack weighed just four pounds when he was born. He needed immediate surgery to correct the valve inversion. Both of his kidneys were badly damaged. Jack spent the first 58 days of his life in the NICU. He couldn’t suck and swallow because he was so low-toned from his unhealthy kidneys. His only food was renal formula, given an ounce at a time.
At age 2 and a half, he’d never had a spoonful of applesauce or a Cheerio. He wasn’t growing and he vomited frequently. Still, he was a happy baby, Ali says. “As a twin he had this built-in motivation. Sam pushed him to keep up.” He also had made it to an important milestone: He was big enough to receive his mom’s kidney and healthy enough for surgery. He was put on a feeding tube so he could build strength for the transplant.
A few months later, Jack and Ali went in for surgery. The transplant went well, but the next year was a white-knuckle ride to see if Jack’s body would assimilate the kidney. He was so immunocompromised that a small fever could quickly get out of control. His family packed their bags regularly for the hospital. “They watch you very closely,” Ali says, “until they don’t see any more outward signs of rejection.”
Eventually, the hospital trips grew less frequent. Jack’s body assimilated the new organ, and life became more normal. Jack relished trying new foods, playing Spider-man with Sam, and wearing his new backpack to preschool. He grew. He thrived. He held his new baby sister, Lucy.
But then, in December 2011, Jack started having trouble holding down food. A biopsy revealed he had glomerulopathy, a condition in which the filters of the kidney are gummed up. The doctors recommended a feeding tube and began talking about another transplant. The major blow was finding out that Jack couldn’t receive Harry’s kidney. “I walked out of the appointment sobbing,” Ali says. “I was like, ‘Please, no. What do we do? How do we even begin to look for a kidney?’ ”