On an otherwise normal day in October 2015, 15-year-old Hayley Illig called her mom from school in Doniphan, Missouri, crying. The whites of her eyes had turned yellow, she told her.
Less than 24 hours later, doctors at St. Louis Children’s Hospital told Hayley and her mom, Annie Barlow, that she was going into acute liver failure.
Two weeks later, Hayley was being wheeled into surgery for a liver transplant.
Hayley has Wilson’s disease, a rare disorder that causes too much copper to accumulate in the liver. These copper levels can reach a life-threatening threshold, which is what happened to Hayley. It caused her skin to turn yellow, her limbs to swell abnormally and fluid to build up in her body.
You’d never know all of this from looking at Hayley now, as she stands in her living room in Cahokia, where she and her mom moved, laughing and showing off the makeup and clothes she bought during the Los Angeles shopping spree that the Make-A-Wish Foundation gave her.
Her sister, 15-year-old Hannah, and cousin, 17-year-old Mackenzie Hamann, laughed, too, as they recalled not the scary moments of Hayley’s surgery, but the sleepovers they’d have in her hospital room, the Chinese food McKenzie brought on Hayley’s sixteenth birthday and painting Hayley’s toenails on the hospital bed.
Hayley said it was her family who helped her through those two weeks in the hospital, especially her cousin, Mackenzie, who visited her nearly every day, and her mom, who would do her makeup for her.
“She didn’t leave, ever,” Hayley said about her mom. “And Mackenzie was there every day, even on her birthday.”
‘My sister might die’
At first they tried to heal Hayley’s liver with medication. After about a week, however, it was clear the medicine wasn’t working. They put her name on a donor list and waited eight days for a match.
On November 7, with her new liver on the way to the hospital, Hayley was taken into surgery.
“Before she went in, that’s when it dawned on me — my sister might die,” Hannah said.
About 15 family members sat nervously in the waiting room during the surgery, which took about five hours.
Hayley didn’t stay down for long after the procedure, however. In fact, she was up walking only 12 hours after her liver transplant. She said the nurse thought she’d been resting for much longer and told her it was time to take a few steps. Without hesitation, Hayley got up and walked around the hospital room.
“She told me I had to start walking, so I got up and started doing it,” she said.
After she went home, a nurse had to come to the house multiple times a day to insert medicine into a Broviac in Hayley’s chest, a central line catheter that sends medicine directly to the heart. The line stayed in Hayley for months.
For Hannah, who was 13 at the time, the experience only increased her admiration for her older sister.
“My sister is probably one of the best people I know,” Hannah said. “Through everything she was just really strong. I wouldn’t have been that way, I would have been a big baby, but she was pretty amazing.”
Recovery and remembrance
Since her liver transplant, Hayley takes an antirejection medication every day, which makes her more susceptible to disease. A cold can be as serious as the flu and put her in the hospital. Getting the flu could kill her. She gets her blood drawn every month and takes medication every day to monitor her recovery.
Most of the time, though, Hayley does all the things any other teenager does. She goes to her job at Applebee’s, watches her favorite show, “Nikita,” and above all, loves to go out to eat (her favorite is Steak ’n’ Shake).
“She’s a bottomless pit,” her mom said, laughing. “She’s always asking me to get her food.”
One of her biggest grievances about her two-week hospital stay wasn’t the surgery, which left her with a long scar on her stomach shaped like an upside-down ‘T,’ or when they pulled the 18-inch feeding tube out of her stomach. Her main concern was missing one of her favorite holidays.
“I was so mad because I couldn’t eat chocolate on Halloween!” she said.
Her mom, though, talked more seriously about the frightening period of time her daughter spent in the hospital.
“It was terrifying,” Barlow said. “There were times when she stopped breathing because she had been under so long. She’d take one breath every minute and 17 seconds, and we’d have to shake her to get her to breathe, and that was so scary for us.”
Even when listening to this story, however, Hayley can’t help but laugh.
“I thought I was fine! I kept just putting the oxygen mask on my face because that’s what they do in the movies, and I thought it was helping!” she said.
About a year after Hayley’s transplant, her mom received a letter from the parents of the organ donor, a teenage boy whose birthday was two days before Hayley’s.
“It’s almost Christmas 2016,” the letter read. “Our son has been gone a year now and would have turned 17 on December 28. We’ve had a great many tears, however, we also often think and pray for the recipients of his organs and tissue.”
The letter described the unnamed-son as “a little quirky, but loved going to the youth group to socialize and enjoy the food and refreshments. ... He could be a very social boy and had an outgoing personality. We hope someday we can meet the recipients of his organs through letters and maybe someday in person. God bless you all.”
Barlow has been encouraging Hayley to send a letter in return.
Shopping and laughter
As for Hayley’s Make-A-Wish request, part of the allure of Los Angeles was the ocean. Hayley said she’d never been to the beach before and made sure she waded into the water, even though it was 60 degrees.
The temperature didn’t have any effect on her Make-A-Wish-sponsored shopping trip, though.
Having her makeup and hair done in the hospital made a big difference to Hayley, improving her mood and keeping her positive.
“It made me feel better because I didn’t look very good,” she said.
After that, she decided to go all out and bought over $300 worth of makeup and nearly $1,000 on clothes, including a matching pair of shoes for her and her boyfriend.
In the fall, she’ll show off her MAC makeup and clothes at Dupo High School as a senior.
Hayley said she’s terrified of her senior year, which seems odd coming from the girl who smiled her way through a rare disease and a liver transplant as a 15-year-old.
“She laughed more than anything during the whole thing,” Hannah said.