“It was very scary. We lived day by day, minute by minute,” Aubrie’s mother, Lisa, said.
When Aubrie was 9 months old, her liver disease had already caused a host of medical issues, ranging from portal hypertension to jaundice. Her spleen enlarged in an effort to do what her liver couldn’t, and Aubrie developed a distended abdomen. It got to the point that her abdomen was “scary large” because any little trauma to that area could be extremely dangerous, so she was put on countless restrictions, Lisa said.
Aubrie was unable to grow and was extremely fatigued.
“Everybody knows the level of play and endurance of a 2 year old, and Aubrie could maybe do half of that,” Lisa said. “She was taking up to four naps a day. I felt bad for her because she was missing out on a lot of things young kids do because her body wasn’t allowing her to continue.”
Aubrie developed an esophageal varices bleed. (Chronic liver disease causes scarring, and that scar tissue blocks the flow of blood through the liver and increases blood flow through the veins of the esophagus. The extra blood flow causes these veins to balloon outward, and heavy bleeding occurs when the veins rupture.) She underwent emergency surgery to put a shunt in her liver.
Esophageal varices bleeds are one of the end stages of liver disease. Aubrie’s liver function numbers were “off the charts bad,” and she was at a “point of desperation,” Lisa said. Aubrie was life flighted twice and had several other close calls.
For years, Lisa and Aubrie made multiple trips back and forth from their home in Michigan to the University of Chicago Children’s Hospital while Lisa’s husband, Steve, balanced his job and cared for their other two children, Andrew, 5, and Alivia, 1.
After Aubrie returned home to continue healing from her shunt surgery, Lisa vividly remembers sitting under the backyard gazebo with Steve as they were enjoying a quiet family dinner. Aubrie and Andrew had finished eating and were playing on the swing set while Alivia was asleep in her high chair.
“Steve and I were taking in the moment because we were all together,” Lisa said. “We were just looking at our little family, and it felt like we could identify with every molecule that was around us, and that’s right when the phone rang.”
That phone call changed everything. A liver was available for Aubrie.
“It felt like a hug – like somebody reached out and hugged our whole family,” Lisa said.
It was 7 p.m., and Lisa, Steve, and Aubrie were told they had six hours to get to Chicago. They booked one of the two remaining flights from Detroit to Chicago and arranged for a neighbor to stay with Andrew and Alivia until Grandma and Grandpa arrived.
After seven years of battling liver failure and one month on the waiting list, Aubrie received a life-saving liver transplant on June 20, 2000.
The first thing Lisa noticed after Aubrie’s transplant was her little rosy cheeks. For the first time in her life, Aubrie’s skin did not have a yellow tint from jaundice, and her abdomen was returning to normal.
“When she was on the road to recovery, she was like a different person,” Lisa said. “Her spirits were lifted and her appetite dramatically increased. To this day, we laugh with Aubrie that she is the biggest eater in our family. She could only eat a little bit at a time before her transplant because her abdomen was so enlarged and there was very little room for anything else.”
As Aubrie’s appetite increased, her extreme fatigue melted away.
“I remember having so much energy after my transplant,” Aubrie said. “Finally, I could play, run, swim and keep up with all my friends. I was always the smallest, but my new liver helped me grow at the same pace as kids my age.”
Aubrie, now 21, is a senior at Bowling Green State University. She plans to attend graduate school and become a genetic counselor. (Genetic counselors evaluate a family’s risk of an inherited medical condition and provide counsel on treatments.)
“My interest in genetics was inspired by the journey that led up to my transplant,” Aubrie said. “I am thankful for the opportunity to pursue my passion, and I hope to help families that are faced with challenges similar to my own.”
Lisa has had some correspondence with Aubrie’s donor family, where she learned Aubrie received her liver from an 18-month-old girl named Kelsey.
“There isn’t a day that goes by that we don’t share her story. Aubrie is here for a reason, and every day, we are thankful for that family who reached out,” Lisa said. “Although the first seven years of Aubrie’s journey were tough, we couldn’t write the new chapter of her story any better than what it is today.”