By writer to pulse.seattlechildrens.org
“I hate to let you know this, however your son wants a kidney transplant.”
These phrases left Rob and Patty Brown dumbstruck.
It was October 2008. That day their 6-year-old son, Connor, had complained that his toes had been cramping throughout hockey apply. Later that night, his arms and toes utterly locked up — a situation known as tetany.
“We raced him to the emergency room considering it was simply one thing foolish,” Rob remembers.
It wasn’t one thing foolish. Connor was identified with nephronophthisis, a uncommon genetic dysfunction that results in kidney failure.
Little did the Browns know this was just the start of an extended and horrifying journey, not just for Connor however for his or her youthful son, Logan, as effectively — a journey that will result in 4 transplants and would take a look at their energy as a household.
The unattainable occurs
Connor was positioned on dialysis after his analysis. In 2009, the Browns flew from their dwelling in Anchorage, Alaska to Seattle, the place Connor obtained a deceased-donor kidney transplant at Seattle Youngsters’s.
They returned dwelling when his restoration was full, and for some time life went again to regular. Connor was even in a position to resume enjoying hockey, although he needed to take additional care to guard his new kidney.
But one thing troubled Rob and Patty. Logan had struggled with well being points since infancy, they usually feared he may develop the identical kidney dysfunction as Connor.
“We had been instructed, ‘Don’t fear, it’s subsequent to unattainable that two brothers have the very same difficulty,’” Rob stated.
However Logan did get sick, and on Christmas Eve 2010 the “unattainable” occurred: The Browns had been knowledgeable that Logan wanted a kidney transplant. He was 5.
Logan spent virtually two years on dialysis. Lastly, in 2012, a kidney grew to become accessible, and the Browns returned to Seattle Youngsters’s for his or her second transplant. They hoped it was the top of their ordeal.
Sadly, Logan’s medical issues didn’t finish there. In 2014, the Browns’ Hawaii trip grew to become a nightmare when Logan inexplicably misplaced most of his eyesight. He spent per week in a Honolulu hospital and was then flown to Seattle Youngsters’s, the place medical doctors identified him with pseudotumor cerebri, a buildup of spinal fluid that creates strain within the cranium. Since then, Logan has been handled by neurologists and neurosurgeons at Seattle Youngsters’s and in Anchorage. He additionally had a shunt positioned in his mind to assist relieve the strain.
Later, Logan fell significantly ailing once more and was identified with congenital hepatic fibrosis, a uncommon illness that damages the liver and generally happens in sufferers with nephronophthisis. As his liver slowly failed, Logan grew sicker and weaker, ultimately needing a wheelchair for mobility.
In 2017, a liver grew to become accessible and the Browns got here to Seattle Youngsters’s for his or her third transplant. Logan’s well being improved quickly after the transplant, and he not wanted the wheelchair.
Lower than two years later, the “unattainable” occurred once more: Connor’s liver started to fail. As his situation deteriorated, he was pressured to cease enjoying hockey.
“Somebody would go the puck to me and I wouldn’t be capable of see it — one way or the other it will simply find yourself on my stick,” he remembers. “My mind wasn’t working quick sufficient lots of occasions.”
In March 2019, Connor obtained a liver transplant at Seattle Youngsters’s — the brothers’ fourth. Like Logan, Connor recovered rapidly, and after receiving approval from his medical doctors, he began enjoying hockey once more.
“Hockey is what stored him alive,” Rob stated.
All through their journey, the Browns have relied on three constants: the energy of their household, the specialised care at Seattle Youngsters’s, and the experience of their physician in Anchorage.
Connor and Logan have leaned on one another for assist and cast an indelible bond. Like many teenage brothers, nevertheless, they don’t make an enormous deal of it.
“We assist one another out,” Logan stated.
“He’s all the time there for you,” Connor stated of his brother.
Rob and Patty have all the time been there, too, combating for his or her kids and modeling resilience, even within the darkest occasions.
“The Brown dad and mom are superb individuals, navigating the extremely complicated care of their sons with a laser sharp give attention to optimizing the boys’ high quality of life,” stated Dr. Jodi Smith, medical director of Kidney Transplant, who has cared for each Connor and Logan. “It has been a privilege to work with them through the years.”
“Not all households would have rolled with the punches that these boys have taken through the years,” stated Dr. Patrick Healey, division chief of Transplantation, who participated in all 4 transplants. “Their method and perspective on issues has actually helped them by this.”
The Seattle Children’s Transplant Center crew has offered skilled care to Connor and Logan for over a decade, together with the groups in Nephrology, Hepatology and the Neurosciences Center. Seattle is a great distance from Anchorage, however Seattle Youngsters’s specialty care is definitely worth the journey.
“Now we have a superb multidisciplinary crew,” Smith stated, who has cared for each Connor and Logan. “We’re distinctive as a result of we look after sufferers from all around the Washington, Alaska, Montana and Idaho area — and even some from Portland. We work carefully with native suppliers and give attention to getting sufferers again to their common lives as quickly as potential.”
The boys have additionally been blessed to have the best supplier in Anchorage: Dr. Jeremy Gitomer, the one pediatric nephrologist in Alaska.
It was Gitomer who instructed Rob and Patty that their sons wanted kidney transplants, and he has overseen their care ever since, together with their liver points. Seattle Youngsters’s suppliers have coordinated with Gitomer carefully all through the years.
“It’s a extremely good collaboration,” Smith stated. “Dr. Gitomer is a exceptional doctor. He’s all the time occupied with what’s finest for the children. Generally he’ll say, ‘We’ve acquired to ship them to Seattle for this process,’ and different occasions he’ll say, ‘We’ll do that process up right here.’ It optimizes the children’ high quality of life by being at dwelling as a lot as they will.”
A interval of stability
April 2020 proved eventful. Logan had a craniotomy during which small items of his cranium had been eliminated to offer room for his mind to swell, thereby lowering strain. Whereas surgeons in Anchorage carried out the craniotomy, Dr. Jason Hauptman, neurosurgeon at Seattle Youngsters’s, really useful the process. Logan’s eyesight, which had been impaired since 2014, has significantly improved.
Additionally in April, Connor was drafted by the Danbury Jr. Hat Tricks minor league hockey crew — an incredible accomplishment for anybody, not to mention a two-time transplant recipient. Enjoying hockey carries danger, however Connor is impressed by different skilled athletes who’ve performed safely and efficiently after transplants, equivalent to Nationwide Basketball Affiliation Corridor of Famer Alonzo Mourning.
The boys’ 4 transplanted organs proceed to operate effectively.
“Proper now — knock on wooden — we’re in place,” Patty stated. “Everyone seems to be pretty well being, pretty secure.”
The Browns are grateful for the coordinated care that helped them attain this level.
“Everybody at Seattle Youngsters’s has been so useful,” Rob stated. “And the communication they’ve with Dr. Gitomer up right here is nice. Between the 2 areas, we’ve been very fortunate.”
Moreover being dedicated to hockey, 18-year-old Connor likes to cook dinner and desires of proudly owning a enterprise sometime — after attaining his dream of enjoying within the Nationwide Hockey League.
Logan, now 14, enjoys cooking too. He additionally loves to attract and paint. Just lately, he’s introduced a completely new power to the Brown family by taking over the drums.
Each Connor and Logan will seemingly want further kidney transplants sooner or later. In line with Smith and Healey, transplanted kidneys sometimes final between 10 and 15 years.
Barring unexpected circumstances, neither of the boys ought to want one other liver transplant.
Rob and Patty stay practical and are merely grateful for this era of relative stability.
“It’s been 12 years of by no means understanding when the opposite shoe would drop,” Rob stated. “None of this has ever been about Patty and I — it’s about what must be finished for the boys. They’ve each dealt with it effectively. We’re fortunate for the children we’ve.”
Over 100,000 individuals, together with many kids, are at present on the nationwide transplant waitlist. Please think about registering as an organ donor. Study extra and register at OrganDonor.gov