Kidney transplant gives 3-year-old a second chance
Infection as newborn had left Strawberry boy fighting for his life as family waited for donor
Editor’s note: This article first appeared in the May 31, 2017, edition of The Ark. It earned third place for Best Feature Story in the California Newspaper Publishers Association’s 2017 California Journalism Awards contest.
By EMILY LAVIN
elavin@thearknewspaper.com
Dane Conrads’ third birthday threatened to mark a milestone his parents weren’t eager to recognize.
Dane needed a kidney. He’d been on the national waiting list for a transplant since he turned 1, but, because doctors had determined he could only accept a kidney from a deceased child donor, a match was proving difficult to find.
Ted and AJ Conrads were hopeful. This was the latest in a string of health issues their son had faced since contracting enterovirus as a newborn; he’d already successfully undergone a liver transplant at just a few weeks old. But the Strawberry residents were also realistic. They’d spent the past three years researching kidney function and organ donation. Dane had been on dialysis for most of his short life, and Ted was well-versed on the toll that can take on a child.
“For infants that have been on dialysis for more than three years, the statistics start to not look so great,” Ted says.
So when AJ finally got the call the family had been waiting for, the timing, she says, was almost unbelievable. It was 2 p.m. on April 6 when Dane’s medical team at Stanford University Medical Center told her they might have a potential donor.
At 1 a.m., Dane went into surgery. By 7 a.m. April 7 — one day before his third birthday — Dane had a new kidney, leaving his family cautiously optimistic that his steepest health hurdles are now behind him.
In the weeks since the surgery, Dane’s “been doing amazingly well,” Ted says. “It’s kind of miraculous.”
Virus leaves Dane fighting for life
Dane was born April 8, 2014, at California Pacific Medical Center in San Francisco. He was the first of two children to AJ, a product manager with Google, and Ted, who works in investment management for Colchis Capital Management in San Francisco. The couple has another son, Carter, who is 20 months old.
Because Dane was born five weeks early, doctors decided to keep him in the hospital’s neonatal intensive care unit for about a week.
“He was breathing great, he was hungry, drinking a lot of milk, growing,” AJ says.
However, the day before he was to be released from the hospital, Dane, then five days old, stopped taking milk. Shortly after, he was circumcised, and his wound wouldn’t stop bleeding. Blood tests quickly revealed his liver was failing.
Dane was immediately transferred to Stanford’s Lucile Packard Children’s Hospital. He was intubated and began receiving blood transfusions, but the newborn was essentially bleeding out.
“His whole body was sort of consumed by this,” Ted says. “When we showed up at Stanford, they didn’t think he would live through the night.”
He did, but doctors were worried about brain damage, which can result from ammonia building up in the body due to liver failure.
Dane spent about 10 days in a comatose state with minimal brain activity and limited liver and kidney function. The hospital chaplain would visit with AJ and Ted while doctors tried to figure out what was wrong. They eventually determined Dane had contracted enterovirus.
Millions of children catch strains of enterovirus each year; it can cause coughing, sneezing and fever. However, the effects of the virus on an infant can be far more severe, says Dr. Waldo Concepcion, a professor of surgery and the chief of clinical transplantation at Stanford University who was part of a team of doctors who treated Dane.
“The immune system is so low that (enterovirus) then becomes a significant pathogen that can cause so much damage,” Concepcion says.
When a CAT scan showed no signs of brain damage, doctors decided to start Dane on hemodialysis, in which a machine takes blood from the body and cleans it of waste before pumping it back into the body.
The virus eventually passed, and Dane opened his eyes and started breathing on his own. He was malnourished from receiving his nutrients solely through an IV, and had broken bones in both of his legs and arms, as well as in one of his wrists.
At about five weeks old, Dane was listed for a liver transplant; he underwent surgery a week later. Concepcion, who performed the transplant, called it a “calculated risk.” There was no guarantee Dane’s body was going to be able to handle the procedure.
However, “there was no survival for him without a transplant,” Concepcion says.
It was around then that AJ says she realized life with Dane was going to be different than she had originally envisioned. At first, she says, she thought the virus would clear without any long-term lingering effects.
“Just a couple more weeks and then back to normal baby life,” she says. “And then I came to the realization after the liver transplant, no, that wasn’t going to happen. Dane was never going to be normal.”
With Dane on dialysis, kidney match proves elusive
Dane was discharged from the hospital when he was 6 months old; he had already begun peritoneal dialysis, which helps stimulate kidney function and clean the blood. The family was waiting to see if Dane’s kidneys would start to work on their own. They didn’t, and when Dane turned 1, he was listed for a kidney transplant.
To both Ted and AJ, that procedure seemed less daunting. Generally, any healthy person over the age of 18 can donate a kidney; if neither Ted nor AJ was a match, they could turn to their extended family members or friends. Dane could also be placed on the national transplant list, where kids usually get preference.
However, an MRI revealed that Dane’s larger veins, which were necessary to support an adult-sized kidney, had been damaged from numerous surgeries. As a result, Dane would only be able to accept a child-sized kidney from a deceased donor with an O blood type.
The parents were told the average wait time for pediatric kidney transplant patients was about seven months. A year went by with no match, and time continued to pass.
“We started to get kind of nervous at that point,” AJ says.
At home, Dane was on dialysis about 11 hours a day, receiving nutrients through a feeding tube. His routine included visits from physical and speech therapists to work on developmental delays; Dane didn’t really walk or talk.
Despite that, Dane has always been a happy kid, AJ says. He loves to visit the beach and the park or take trips on the family boat. Because he’s immune-suppressed, he hasn’t been able to spend much time around other children, but he’s still very social, something AJ attributes to him spending so much time around doctors and nurses in the hospital.
“He just loves people,” she says. “Any new person that comes to the house, he’s smiling and flirting with them and batting his eyes.”
Bolstered by the support of the doctors and nurses at Stanford, Ted and AJ say they’ve tried to take Dane’s health challenges in stride, throwing their energy into researching solutions to the problems Dane’s encountered.
“When you’re in the middle of something that’s really traumatic, you just kind of focus on what we could do,” AJ says. “We focused on whatever the problem was that day, and there was always a different problem every day.”
At first, the family kept much of what they were dealing with private. However, as time passed, Ted and AJ decided to share their story on social media, starting the Facebook page “Kidney for Dane.” They viewed it as another way to potentially locate an organ, but it also helped them connect with other families in similar situations and generate increased awareness of the importance of organ donation, Ted says.
Concepcion called the Conrads a “model family.”
“They looked for resources everywhere, and it’s not about money, it’s about the initiative to go out there and find resources, awareness, develop a whole movement on how to increase organ donation, how to create a network of concerned people,” he says.
High-risk transplant marks family’s next chapter
As it turned out, Dane was matched through the national donor list. But when AJ got the call, a successful transplant wasn’t a sure thing. Doctors told her there was about a 50 percent chance the organ, once harvested, would be viable for a transplant.
Ted, who was on a business trip in New York City, caught a flight home, arriving at the hospital about 11:30 p.m. The experience triggered mixed emotions, he says.
“You’re kind of bracing yourself for what could be, in the case of Dane, either a really great outcome or a not great outcome,” Ted says.
Post-transplant, his parents are already noticing what Ted describes as “dramatic” changes in Dane. He’s walking, climbing stairs and trying to ride a bike. He’s verbalizing more. Though he still uses a feeding tube, AJ is hopeful that can be phased out in a few years, and Dane will only need a tube to supply additional fluids.
“You can just tell that he feels better and stronger and healthier and happier,” Ted says.
There are still challenges ahead. Dane will continue to be monitored. The chances his body might reject the kidney are highest three to six months after the transplant, Ted says.
He’ll also need another transplant at some point. Transplants from deceased donors typically last 10–15 years, as opposed to the 20–25-year lifespan of a living donor transplant. And Dane will remain on an extensive regimen of immunosuppressant medication.
But for now, the family is celebrating the latest hurdle Dane has been able to conquer. AJ says the last several weeks have felt like a second honeymoon for her and Ted — she’s dubbed the elation they’re feeling as their “kidneymoon.”
“We’re just really, really happy for Dane that he now has this second chance,” she says.
Emily Lavin is The Ark’s assistant editor and Strawberry reporter. Reach her at 415–944–3841.
