Suburban firefighter's wife gives part of liver to another's toddler

The moms, six young kids between them, made a pact.

Tanya Casey and Holly Schlesser, wives of suburban firefighters and type-A personalities, promised not to cry, to go back to the way their friendship was before the surgeries.

Schlesser tends to stick to the deal. She describes her decision as an easy one, a choice of inconvenience for her in return for a healthy life for Casey's baby, Madison, a Streamwood firefighter's daughter. One that she says any parent would make for a sick child.

It's Casey who has to pause, gather herself and hold back the tears.

“I couldn't talk to her about it because if the mom in me realized how much she gave up with her kids to help Madison, we would both lose it,” Casey said.

Last fall, surgeons removed a piece of Schlesser's liver and transplanted it into Madison. The procedure carries serious risk — liver failure, hemorrhage, death — but Schlesser volunteered anyway.

Madison, now 11 months, will always need medication, every day, to keep her growing body from rejecting the transplant.

But she has the Schlessers and another group supporting her recovery: firefighters who are organizing a benefit Friday that will help pay for Madison's medical bills.

“It's a great chance to see how the fire service comes together to take care of its own,” said Schlesser's husband, Jay, a Schaumburg firefighter-paramedic.

A waiting game

The night before one of Madison's twice-weekly doctors appointments, Holly Schlesser took Madison into her arms and mimicked her baby talk. “Really? I don't know this noise,” the St. Charles woman said. “I'm used to the squeal. I know the squeal.”

Madison is curious and, like most kids, loves Disney's “Frozen.” Nurses that don't know her will read her charts and see the tip: Play the movie to coax her out of a tantrum induced by exams or needles.

She had a little bout with rejection in early December, her mom said, when her immune system started to attack Schlesser's liver. But she's “trending in the right direction,” Tanya Casey said.

“It's just a waiting game to see what her body does with it and how she handles it herself,” she said.

Schlesser looks forward to Madison's milestones. Prom. Graduation.

“Three months ago, we weren't really sure she was ever going to have that,” she said.

Three months ago, Madison had liver failure. She was born with a genetic disorder, Alpha-1 antitrypsin deficiency, that only rarely causes severe liver damage in infants. Her twin, Matthew, Schlesser's godson, was healthy.

Madison would spend about two months on a waiting list for a liver transplant.

“You see your child getting sicker and sicker and there's nothing ... you just have to sit there and hold her and that's all you can do,” Tanya Casey said.

Finding a match boils down to compatible size and blood type. And the liver is the only internal organ that grows back for both donor and recipient.

But the odds of receiving a transplant are a tragedy, says Dr. Talia Baker, one of the surgeons on Schlesser's team and the director of the living donor liver transplant program at Northwestern Medicine's Comprehensive Transplant Center.

About 16,000 patients are waiting for a liver transplant. Last year, 5,527 ended up receiving one. Some of that has to do with a limited supply of organs from donors who have died.

“One of the reasons we do living donations is a way to expand the donor pool as safely as we possibly can,” Baker said.

For living donors, the complication rate is consistently reported at about 40 percent nationwide. The majority of complications, though, resolve quickly, Baker said.

Schlesser offered to donate when Madison's uncle wasn't a match. She had to work the hardest to convince Madison's dad, Erik Casey, a Streamwood firefighter-paramedic who knew the risks. But Schlesser, Madison's mom remembers, “put her foot down.”

“I was going to go to my best friend's baby's funeral,” Schlesser said bluntly. “That was just not an option for me.”

Brotherhood

The Schlessers will run a silent auction and raffle at the fundraiser Friday at the Old Crow Smokehouse restaurant in Schaumburg.

Firefighters from departments in Schaumburg, Streamwood and Evanston, where Erik Casey's brother and father are captains, will run the event.

Because she's on steroids, Madison has an appetite, going through $30 containers of special formula every two days, a cost that isn't funded by the South Elgin family's insurance, Casey said, citing one example of the extra expenses the family faces.

Madison's mom returned to work Jan. 5 after taking a two-month, unpaid leave from her teaching job in Elgin Area District U-46.

Her dad also took that time off to hold vigil in the hospital, but co-workers covered his shift so the family wouldn't lose another paycheck. Schaumburg firefighters did the same for Schlesser's husband while he cared for their kids during her recovery.

“We call the firehouse a brotherhood, and unless you're really in it, it's hard for some people to understand,” Erik Casey said. “These guys truly are my brothers. ... There's nothing I could ever do to thank these guys.”

That's what he says of Holly Schlesser, too.

“It's something I'll never be able to pay her back,” he said.

A humble Schlesser, whose own recovery stretched past a month, dismisses all the emotions around her decision.

“I saved her life for six weeks of discomfort,” she said.