Dad's donated liver saves son's life
TCH's Dan Janowick, son Will recovering well six months after transplant surgery
Last updated 4/27/2023 at 10:15am | View PDF
From the time Dan Janowick's son Will was diagnosed with biliary atresia when he was 3 weeks old, they knew he would need a liver transplant. They just didn't know when.
The Kasai procedure he underwent at 4 weeks to bypass his blocked bile ducts and connect his liver directly to his small intestine was successful - but it's not a cure, said Janowick, executive director of The Community House in Hinsdale.
"They explained it that a third of the kids who have the Kasai procedure need a transplant immediately - it just doesn't work. The next third of the kids need it within the first year of life. And Will luckily fell into the final third, which was at some point in your future, you're likely to need a liver transplant," Janowick said.
That point came in early 2022 when Will was told he needed a transplant.
"The liver does so many things," Janowick explained. "The liver performs hundreds of daily functions. Because his liver had cirrhosis even from the first four weeks of life, his body had to work extra hard to pump blood through a hardened liver."
That created internal bleeding at times, and his liver's inability to process nutrients interfered with his growth.
Will was placed on the organ transplant waiting list in July, Janowick said, noting more than 100,000 people in this country are on waiting lists for organs. That's when Janowick and his wife, Amanda Kammes, decided to take things into their own hands. They asked their son whom he thought should be tested first.
"He said I should do it, because if Mom did it, who would take care of us?" Janowick said with a laugh.
Although there's not a lot of evidence that indicates a living donor is better, Will's parents preferred that option.
"Plus it takes away a lot of the uncertainty. Being on the waiting list is just a wait that is really hard," he said.
Janowick said his only hesitation was knowing he wouldn't be there to support Amanda and Will during and after surgery.
On Oct. 5, 2022, doctors removed 20 percent of Janowick's liver for Will.
As he grows, it will grow with him. Janowick's liver regrew to its normal size in about three months.
Janowick was discharged from Northwestern three days after the operation, but Will remained at Lurie Children's Hospital for 10 days. The family lived for two weeks after that at the Ronald McDonald House, where he could be close to the hospital while his progress was monitored. Janowick said he had volunteered for Ronald McDonald House in the past, never expecting to stay at one.
"Being on the receiving end of services, you realize how critically important it is to be nearby when you have children in the hospital," he said.
Six months after the surgery, father and son are doing well.
"His joy right now is he loves playing basketball all the time and comparatively he just wouldn't have the energy to do nearly as much as he's doing in these first six months when he's still technically healing and trying to get better and adjust to all the medications," he said.
Will has gained 20 pounds and grown 1.5 inches since the surgery, his mom said.
"It's been amazing just to see the steady growth that he has had over the past sixth months," Kammes said. "He has color in his cheeks again.
"While everything is not back to normal normal, it's slowly getting there, and we're just so grateful for the progress he's made in the short time already. To see him do the normal 12-year-old boy things is great," she added.
Janowick credited his wife for holding the family together and caring for him and Will after the surgery. The help and generosity of friends and family also was critical.
"People are willing to go out of their way to make you comfortable and do things that are well outside the normal bounds of friendship," he said.
Friends and neighbors arranged for food to be dropped off, a landscaper to do their fall yard cleanup and a kennel to board their dog while they were living at the Ronald McDonald House. They also helped Janowick's oldest son, 16-year-old Josh, get where he needed to be.
"When you need every single little thing for about a month post-op, it really adds up," Janowick said.
Co-workers and board members of The Community House also offered their support, sending baskets with LEGOS, blankets, puzzle books, restaurant gift cards and more.
"The staff and the board of trustees were so thoughtful in the care packages they sent for me, for Amanda, for Josh and for Will just to help manage through," he said.
The transition back to work was challenging, as Janowick's body was working to recover from major surgery and re-grow its largest solid organ.
"I couldn't do a 10-minute phone call without being exhausted," he said. "Everything was just exhausting."
He said they feel blessed that both recoveries have gone smoothly.
"Now that we've passed six months, it feels like a blink of an eye," he said.
Janowick said his primary goal in sharing his story is to get people to go to http://www.donatelife.net and sign up to be an organ donor. Donating blood also is critical, he noted.
"I think the stats say that 50 percent of the U.S. population is registered as an organ donor, and I think that number is way too low," he said. "There is such a remarkable thing that can happen through tragedy."
Janowick sees nothing heroic about his own decision.
"The truth is anybody who could would do it for their child," he said. "Everybody gives of themselves to their children. You see people do so much. I get the joy of the scar and the physical representation, but I've been inspired by so many stories of what people have done for their families."