KSHB 41 reporter Tod Palmer covers sports business and eastern Jackson County. Share your story idea with Tod.
Playing with her favorite toy on the floor of her family’s Independence home, curious and bubbly 8-month-old Olivia coos as she takes in the world.
She seems like a normal, healthy baby girl, but most infants her age haven’t been through the harrowing experiences she’s already endured.
Olivia was diagnosed with a rare liver condition at three weeks old and has spent more time at Children’s Mercy Hospital than any baby should have to spend — and her fight is only beginning in some ways.
“She has biliary atresia,” Olivia’s mom, Ciera Chronister, explained Tuesday morning as her boyfriend and Olivia’s father, Preston, rocked her to sleep across the room.
Olivia was born without the ducts that drain bile from the liver, carrying it through the gallbladder to the small intestine. The condition affects one in 10,000 to 20,000 births, according to the National Library of Medicine.
“We had never heard of it,” Chronister said of the liver condition. “That was the first that we had heard of it. We actually kind of struggled to get a diagnosis at first.”
Olivia had jaundice in those early days, a condition that usually indicates an issue with the liver and is caused by too much bilirubin in the blood.
It’s not uncommon among newborns, so initially there didn’t seem to be any need for panic.
“We kind of just expected it to go away on its own with some sunlight from the windows or just over time, but it didn't,” Chronister said.
A liver specialist ordered a liver biopsy, which led to the biliary atresia diagnosis, and five days later, Olivia underwent a Kasai procedure — a surgery that removes the gallbladder and connects the liver directly to the small intestine.
Olivia was only 1 month old and spent her first Thanksgiving in the hospital.
“That was very scary,” Chronister said. “We had our little newborn baby that we were expecting everything to be healthy and happy with. To be told that she was going to have to go under anesthesia and a piece of her liver be taken was very hard to accept.”
As is often the case, the Kasai procedure hasn’t proven to be a permanent fix for Olivia, who needs a new liver.
“There is no other option,” Chronister said. “There's no other procedures, no other kind of medication. That's the only solution for her.”
Amid battles with the insurance company, batteries of tests and brief hospital stays to stave off infections, Olivia’s name is set to be added to the national transplant list within the next two weeks — the close of one chapter and the opening of another.
“The stress has been immense,” Chronister said. “She requires lots of labs and prescriptions. While we do have insurance coverage, there are deductibles and co-pays and things that are adding up. So yeah, it's been tough.”
Ciera and Preston have four daughters combined, including Olivia. Both also work and their house was recently struck by lightning, frying several electronics, according to a Go Fund Me update posted by Ciera’s best friend, Cheyenne Lankford.
They credit the support of family, friends and the wider community for helping them navigate the challenges of the last eight months and those that remain ahead.
“Our main concern is to do what we can to make sure that she has a regular, healthy, happy life,” Chronister said. “We just can't wait until we can get to a point where we can feel like we can get past the hospital stays and kind of living in the hospital. We're hoping that the transplant can bring us that kind of comfort.”
Lankford also helped organize a fundraiser from 5 to 9 p.m. on Tuesday, July 22, at Pizza Ranch, 4660 S Bass Pro Drive in Independence. Olivia’s family will receive 15% of the dinner sales and patrons can also leave tips.
“It's just amazing to see everybody come together for Olivia and just see how special she is,” Chronister said. “... She is awesome. When she comes in the room, she just lights up the room. Everybody talks about how happy and smiling she is, so she's just lots of fun, full of life.”
With help from the Independence community, she’ll remain that way for years to come.
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