“I hate to tell you this, but your son needs a kidney transplant.”
Those words left Rob and Patty Brown dumbstruck.
It was October 2008. That day their 6-year-old son, Connor, had complained that his feet were cramping during hockey practice. Later that evening, his hands and feet completely locked up — a condition called tetany.
“We raced him to the emergency room thinking it was just something silly,” Rob remembers.
It wasn’t something silly. Connor was diagnosed with nephronophthisis, a rare genetic disorder that leads to kidney failure.
Little did the Browns know this was just the beginning of a long and frightening journey, not only for Connor but for their younger son, Logan, as well — a journey that would lead to four transplants and would test their strength as a family.
The impossible happens
Connor was placed on dialysis after his diagnosis. In 2009, the Browns flew from their home in Anchorage, Alaska to Seattle, where Connor received a deceased-donor kidney transplant at Seattle Children’s.
They returned home when his recovery was complete, and for a while life went back to normal. Connor was even able to resume playing hockey, though he had to take extra care to protect his new kidney.
Yet something troubled Rob and Patty. Logan had struggled with health issues since infancy, and they feared he might develop the same kidney disorder as Connor.
“We were told, ‘Don’t worry, it’s next to impossible that two brothers have the exact same issue,’” Rob said.
But Logan did get sick, and on Christmas Eve 2010 the “impossible” happened: The Browns were informed that Logan needed a kidney transplant. He was 5.
Logan spent almost two years on dialysis. Finally, in 2012, a kidney became available, and the Browns returned to Seattle Children’s for their second transplant. They hoped it was the end of their ordeal.
Unfortunately, Logan’s medical concerns didn’t end there. In 2014, the Browns’ Hawaii vacation became a nightmare when Logan inexplicably lost most of his eyesight. He spent a week in a Honolulu hospital and was then flown to Seattle Children’s, where doctors diagnosed him with pseudotumor cerebri, a buildup of spinal fluid that creates pressure in the skull. Since then, Logan has been treated by neurologists and neurosurgeons at Seattle Children’s and in Anchorage. He also had a shunt placed in his brain to help relieve the pressure.
Later, Logan fell seriously ill again and was diagnosed with congenital hepatic fibrosis, a rare disease that damages the liver and sometimes occurs in patients with nephronophthisis. As his liver slowly failed, Logan grew sicker and weaker, eventually needing a wheelchair for mobility.
In 2017, a liver became available and the Browns came to Seattle Children’s for their third transplant. Logan’s health improved rapidly after the transplant, and he no longer needed the wheelchair.
Less than two years later, the “impossible” happened again: Connor’s liver began to fail. As his condition deteriorated, he was forced to stop playing hockey.
“Someone would pass the puck to me and I wouldn’t be able to see it — somehow it would just end up on my stick,” he recalls. “My brain wasn’t working fast enough a lot of times.”
In March 2019, Connor received a liver transplant at Seattle Children’s — the brothers’ fourth. Like Logan, Connor recovered quickly, and after receiving approval from his doctors, he started playing hockey again.
“Hockey is what kept him alive,” Rob said.
Throughout their journey, the Browns have relied on three constants: the strength of their family, the specialized care at Seattle Children’s, and the expertise of their doctor in Anchorage.
Connor and Logan have leaned on each other for support and forged an indelible bond. Like many teenage brothers, however, they don’t make a big deal of it.
“We help each other out,” Logan said.
“He’s always there for you,” Connor said of his brother.
Rob and Patty have always been there, too, fighting for their children and modeling resilience, even in the darkest times.
“The Brown parents are amazing people, navigating the incredibly complex care of their sons with a laser sharp focus on optimizing the boys’ quality of life,” said Dr. Jodi Smith, medical director of Kidney Transplant, who has cared for both Connor and Logan. “It has been a privilege to work with them over the years.”
“Not all families would have rolled with the punches that these boys have taken over the years,” said Dr. Patrick Healey, division chief of Transplantation, who participated in all four transplants. “Their approach and perspective on things has really helped them through this.”
The Seattle Children’s Transplant Center team has provided expert care to Connor and Logan for over a decade, along with the teams in Nephrology, Hepatology and the Neurosciences Center. Seattle is a long way from Anchorage, but Seattle Children’s specialty care is worth the trip.
“We have an excellent multidisciplinary team,” Smith said, who has cared for both Connor and Logan. “We’re unique because we care for patients from all over the Washington, Alaska, Montana and Idaho region — and even some from Portland. We work closely with local providers and focus on getting patients back to their regular lives as soon as possible.”
The boys have also been blessed to have the right provider in Anchorage: Dr. Jeremy Gitomer, the only pediatric nephrologist in Alaska.
It was Gitomer who told Rob and Patty that their sons needed kidney transplants, and he has overseen their care ever since, including their liver issues. Seattle Children’s providers have coordinated with Gitomer closely throughout the years.
“It’s a really good collaboration,” Smith said. “Dr. Gitomer is a remarkable physician. He’s always thinking about what’s best for the kids. Sometimes he’ll say, ‘We’ve got to send them to Seattle for this procedure,’ and other times he’ll say, ‘We’ll do this procedure up here.’ It optimizes the kids’ quality of life by being at home as much as they can.”
A period of stability
April 2020 proved eventful. Logan had a craniotomy in which small pieces of his skull were removed to provide room for his brain to swell, thereby reducing pressure. While surgeons in Anchorage performed the craniotomy, Dr. Jason Hauptman, neurosurgeon at Seattle Children’s, recommended the procedure. Logan’s eyesight, which had been impaired since 2014, has greatly improved.
Also in April, Connor was drafted by the Danbury Jr. Hat Tricks minor league hockey team — a tremendous accomplishment for anyone, let alone a two-time transplant recipient. Playing hockey carries risk, but Connor is inspired by other professional athletes who have played safely and successfully after transplants, such as National Basketball Association Hall of Famer Alonzo Mourning.
The boys’ four transplanted organs continue to function well.
“Right now — knock on wood — we’re in a good place,” Patty said. “Everyone is fairly health, fairly stable.”
The Browns are thankful for the coordinated care that helped them reach this point.
“Everyone at Seattle Children’s has been so helpful,” Rob said. “And the communication they have with Dr. Gitomer up here is great. Between the two locations, we’ve been very lucky.”
Besides being devoted to hockey, 18-year-old Connor likes to cook and dreams of owning a business someday — after achieving his dream of playing in the National Hockey League.
Logan, now 14, enjoys cooking too. He also loves to draw and paint. Recently, he’s brought an entirely new energy to the Brown household by taking up the drums.
Both Connor and Logan will likely need additional kidney transplants in the future. According to Smith and Healey, transplanted kidneys typically last between 10 and 15 years.
Barring unforeseen circumstances, neither of the boys should need another liver transplant.
Rob and Patty remain realistic and are simply thankful for this period of relative stability.
“It’s been 12 years of never knowing when the other shoe would drop,” Rob said. “None of this has ever been about Patty and I — it’s about what needs to be done for the boys. They’ve both handled it well. We’re lucky for the kids we have.”
Over 100,000 people, including many children, are currently on the national transplant waitlist. Please consider registering as an organ donor. Learn more and register at OrganDonor.gov