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Mekea's Gift

Jack Certain was just 7 years old when his kidney began to fail. Then a miracle happened.

jack

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."
 

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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.

0114_mekeasgift_p01.jpgAli 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.”
 

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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?’ ”

Putting Jack on the deceased donor list was an option, but not a good one, and not just because 100,000 people were already on the list. “In every case, a living donor is preferred—the outcomes are far superior,” Verghese says. “The most obvious reason is that a kidney with warm blood pumping through it is put almost directly into the patient’s body, but with a deceased kidney it is quite a number of hours on ice before it goes to transplant.”

Even at a world-class medical institution like the U of M hospitals, the kidney donor program receives and tests potential donors; it doesn’t find them. That’s the family’s job. It was time to network. “When we realized it was up to us, that was a game changer,” Ali says. The family started telling everyone they knew.

As word spread, phone calls from type O donors started pouring in to the Transplant Center. “Two hundred people called for Jack,” says transplant coordinator Marie Cook. “It was a full-time job.” Every potential donor was screened and their blood put through a cross match, in which the medical center mixes their blood cells with the recipient’s to see if they react. This tells the doctors whether a recipient’s body can accept the kidney. “We reviewed Jack’s case every week to come up with a match, and every time we thought we were close, there would be an issue,” Cook says.

A match could come from anywhere. More than 1,000 children have received a kidney transplant at the U of M. More than half of those are from living donors—from friends, family members, directed donors who call in to donate to a specific person, and non-directed donors who call in to donate to anyone who needs one.

“The outcomes are fabulous for both the children and their donors,” Verghese says. “If people only knew the difference they could make, I know more people would do it.” There are 15 children like Jack currently waiting for donations at Amplatz. More than 8,000 successful kidney transplants, 1,000 of those in children, have been performed at the transplant center where Verghese works. The center celebrated that fact on its 50th anniversary on October 18, which also happens to be my sister Mekea’s birthday.

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My little sister Mekea entered the world on October 18, 1977, with an innate “sweetness” that became my dad’s nickname for her and her steady demeanor. My parents remember her as a toddler who barely made a peep when she skinned a knee or bonked her head. Once when she was strapped into our mother’s bike seat, I watched as the whole thing tipped over onto the front lawn. She lay there on her side, unruffled, a look of bewilderment in her eyes, but no tears.

In college, Mekea chose the teaching profession on instinct. As a student at the University of Wisconsin-Madison, she watched a group of school-aged kids walk through the union and was overcome by the feeling that she was meant to be a teacher. She taught second grade for several years before taking time off to have her own three daughters: Grace, Frances, and Mary Ruth.

She acted on a similar instinct the day she dialed the transplant center. After the initial screening over the phone and lots of paperwork on her medical history and blood type, she completed a tissue typing test by swabbing the inside of her cheeks with a buccal swab that would be enough of a sample for the immunology team to cross match her antigens with Jack’s.

It didn’t take long for her to get a call back. “They said, ‘You’re a good match. Are you serious about moving forward with this?’ ” Mekea says. “At this point, I knew I would be. I think I had known it long before. I imagined my child waiting on a stranger for help and hoping somebody would feel the same instinct I did. Kind of like watching a child run into the street and knowing you could get yourself killed, but you would still run after them, wouldn’t you?”

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Transplant coordinator Anne Lecuyer-Koich met Mekea in May 2013 when she came in with her husband for a full evaluation. “Only the crème de la crème make it through,” says Lecuyer-Koich, who was solely dedicated to handling Mekea’s case. As is standard practice, her case was kept confidential and completely separate from Jack’s to prevent conflicts of interest. Mekea had her own transplant team; Jack had his. Mekea met with Lecuyer-Koich, the doctors, and a social worker. She underwent an EKG, a chest X-ray, blood tests, urine tests, and a psych evaluation. She was given information about the surgery, recovery, and short- and long-term effects.

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Mekea was about as close to a perfect match for Jack as you can get, and she passed the tests. Now she wanted to talk it through with her family. Mekea and her husband, Tim, gathered us in my parents’ living room and explained what she had learned in the evaluation: Research shows that living donors live a normal life expectancy without more risk than the average person, and since kidneys are now extracted laparoscopically, there would be minimum scarring and recovery, and she’d likely be back to normal in two to six weeks. Her remaining kidney would grow to compensate for the missing one.

A comprehensive U of M study in 2009 that tracked donors all the way back to 1963 revealed that the risk of kidney failure is much lower than what is observed in the general population, and the chances were slim to none that Mekea or her daughters would ever need her other kidney. Donors live as long if not longer than average, and this is partly because donors must pass strict selection criteria before they’re allowed to donate—their general good health pays off, as does the psychological boon that comes from their altruistic act.

We hashed it out and asked Mekea our questions. There were tears when we talked about the magnitude of her decision—the possible risks that surgery entails.

"There is always a risk to surgery,” Lecuyer-Koich says. “The biggest risk is that you could die. You could also die getting hit by a car, but you have to go home today, don’t you? You don’t have to come here and give a kidney.”

My dad put it this way: “Let’s say you were the only one in the world who could donate to Jack. Then the decision would be clear. But why does it have to be you?”

Mekea answered, “Why not me?”

A week later, we gathered at U of M Fairview hospital at 6 am and Mekea was wheeled into surgery. She would spend four hours under general anesthesia. Four one-inch incisions would be cut into her lower abdomen so tiny probes and a camera called a laparoscope could be inserted, allowing surgeon Dr. Raja Kandaswamy to view her kidney as he operated. Her kidney would then be slipped into a clear plastic bag and removed through an incision.

We sat in the waiting room with our iPads and phones. Tim stood up frequently, checking the electronic screen hung on the wall to note the surgery’s progress and grabbing our coffee orders. Finally Kandaswamy, bespectacled and congenial, walked out and told us, “It went wonderfully. She has very favorable anatomy.” After a collective exhale, we chuckled at his report.

Mekea’s kidney was on its way to Amplatz. It had been wrapped in plastic and placed on ice inside a cooler so it could be driven to the operating room across the river, where Jack, his family, and surgeon Dr. Srinath Chinnakotla were waiting. “Mekea’s beautiful kidney just arrived safely,” Ali texted us. It was Jack’s turn.

“With kids, this type of surgery is technically challenging,” Chinnakotla says. “The technique has to be very precise—the vessels are smaller and finer—so your first shot has to be your best shot.” Over the next three hours, Chinnakotla sewed the kidney’s renal vein and artery to Jack’s receiving vein and artery, so that his blood would flow through Mekea’s kidney and start producing urine for him right away. “Pee is the key,” Harry posted on Facebook a few hours later, along with a picture of Jack’s full urine bag. Success.

Three days later, Jack’s bloating had gone down, his cheeks were pinked up, and he took his first steps post-op. The Certains posted a picture of him on Facebook, sitting up in bed, smiling and snacking.

“Kids have a tremendous rate of recovery,” says Chinnakotla, who describes Jack’s success story as the perfect triangle: a young patient with a wonderful attitude and a strong support system, a top medical institution to meet that patient’s complex needs, and an extraordinary person willing to step forward. “For a person to undergo a medical procedure not to benefit themself but to benefit someone else is the highest level of altruism,” he says. “Without Mekea’s gift, I wouldn’t have been able to do my job.”

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When Mekea arrived home from the hospital, a banner made by a neighbor was strung up over the Duffys’ driveway—“612 Loves You”—which said it all. Gifts, letters, and meals streamed in, and people stopped in to say thanks. “Thank you, Mekea. What you did was a gift to all of us,” one person wrote.

It’s the unforeseen connections that strike Mekea when she looks back on that gift. “You never know how someone will appear in your life,” she says. “We have conversations with people every day, on the bus, at the park. Ali was open enough to share her story with me, and I was virtually a stranger. But we made a connection and look where it led.” Less than two weeks after the surgery, Mekea and I met at Linden Hills Park and waited along with a sea of other parents for our oldest daughters to return from summer camp. Mekea was still sore, she still had a few food aversions, and she wore a loose T-shirt to cover her bloated stomach and fresh scars. But her recovery was going well. She was driving her minivan again and getting back to herself.

“Look,” she said, turning toward the crowd. “It’s Jack!”

There he was, standing next to his mom. Upright, rosy cheeked, a shy smile blossoming on his face as he saw us approaching. His body was assimilating so well to Mekea’s kidney that he had been discharged from the hospital two weeks earlier than anticipated.

“Hi!” Mekea said, walking toward him and Ali. The moms embraced.

We stood quietly as the yellow bus pulled up, and our bedraggled kids poured out with their backpacks and mosquito bites and craft projects.

“Hungry, guys?” Ali said to Jack and Sam. “He can eat cheese puffs now, thanks to you.” Ali winked at Mekea and then we walked over to the playground together. We were just moms living in the same neighborhood who’d help each other if we could. As my sister had said when she made her decision, it was that simple.

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