Baby needs liver transplant because of rare condition
By Amy Lavalley Post-Tribune correspondent February 5, 2012 6:22PM
Kattie Kottka, 22, snuggles with her five-month old son Julian at her mother's home in Hanna Friday Feb. 3, 2012. Julian suffers from a form of liver disease and needs a transplant. Jaundice has caused his skin to turn a deep shade of yellow. | Andy Lavalley~Sun-Times Media
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For more on biliary atresia, visit the American Liver Foundation’s website at http://www.liverfoundation.org/abouttheliver/info/biliaryatresia/.
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Updated: March 7, 2012 8:06AM
HANNA — Julian Lupian seems like any other 5-month-old boy.
He smiles and laughs; when his mom, Katie Kottka, places him on his stomach, he scooches forward a bit in an early attempt to crawl.
Despite the 14 medicines and special formula he takes each day to combat his failing liver, his regular trips to Riley Hospital for Children in Indianapolis for a battery of blood and liver function tests and the need for a liver transplant in the coming months, Julian acts as an infant should.
“That’s what he’s been dealt and that’s all he knows. I think he learns to deal with it,” said his grandmother, Kathy Fifeld.
Kottka, 22, moved with Julian into her mother’s Hanna home in December after mold was found in her Merrillville apartment. She stays home to care for him; Fifeld is a machinist at Urschel Laboratories in Valparaiso.
Julian was born Sept. 8, and almost immediately, Kottka sensed something was wrong.
“He was always yellow, from the day I brought him home,” she said.
An assortment of tests revealed Julian had a small gallbladder that wasn’t connected to anything, and his bilirubin levels were high, revealing possible liver dysfunction.
When he was 6 weeks old, doctors diagnosed Julian with biliary atresia, which, according to the American Liver Foundation website, is a disease of the bile ducts that affects only infants. Bile, made in the liver, travels to the small intestine, where it helps digest fats.
In biliary atresia, the bile ducts become inflamed and blocked soon after birth. Bile remains in the liver where it starts to destroy liver cells and cause scarring of the liver.
After his diagnosis, doctors took out Julian’s gallbladder and connected his bile ducts directly to his intestine, but that’s only a temporary fix. Because his bilirubin and liver enzymes remain high, he will need a liver transplant in the next few months, Kottka said.
“It’s not a cure, but it’s the closest thing they have to it,” she said.
The family is exploring who could be a match as a live donor.
Fifeld, 51, would like to be that donor, and she and Julian both share A-positive blood type, but she suffered a heart attack and two subsequent rounds of open heart surgery five years ago; she still is exploring if she may be eligible.
According to statistics from the Childhood Liver Disease Research and Education Network, 1 in 15,000 to 20,000 children is born with biliary atresia.
Fifty percent of them need a transplant by age 2, and 90 percent of them need a transplant by age 10; very few of them make it to adulthood without a transplant.
At this point, Julian is too healthy to go on the transplant list. Despite his blood test results, he continues to gain weight, though he still is a bit small for his age.
“It’s a good thing, but we don’t want him to get too sick” before he qualifies for a transplant, Fifeld said.
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