By Kelly Frances
First-time father Shawn Morrissey has a lot on his plate these days. In his own words, he is "trying to be superman for one little girl," his new daughter, Hayoon.
Hayoon was born on Jan 28 to Morrissey, a Canadian English teacher, and his wife Kim Yoo-mi. A cheerful, giggly bundle, she weighed 2.23 kg at birth, and seemed healthy.
However, it wasn't long before Hayoon displayed signs that would ultimately reveal a congenital condition called biliary atresia, a rare disease in which the tubes responsible for draining liquid bile from the liver are progressively destroyed. The condition is irreversible, though surgical intervention can increase both the quality and duration of life.
"We started to notice that the signs of jaundice in Hayoon's face and in the whites of her eyes didn't dissipate after a month or so,” recalls Morrissey.
"Jaundice, or yellowing of the skin and eyes, is a common symptom (of biliary atresia)", explained pediatrician Choi Jang-hwan of Dongguk University Ilsan Hospital. "Other symptoms are clay colored stools, dark urine, and a hardened liver."
The cause is uncertain, though congenital malformation or perinatal infection is suspected.
"If untreated, the disease results in progressive liver failure, leading to death within 1.5 to 2 years after birth,” explained Choi.
Biliary atresia has been detected in one out of every10,000-15,000 live births, affecting more girls than boys. Early detection is critical.
Morrissey recounts the events that led to Hayoon's diagnosis with frustration.
"We asked our pediatrician at the hospital where Hayoon was born about the yellowish hues and were told there was nothing to worry about. On a subsequent check-up, we asked again and were told again that it was of no concern."
Choi remarked that it is often difficult to distinguish biliary atresia from neonatal jaundice for one month after birth, though delayed detection can lead to death.
"This (lack of concern) was enough to send us to a different hospital, namely Dong-guk University Hospital,” continued Morrissey. Doctors there immediately ordered tests and soon recommended the Kasai procedure.
The Kasai procedure, an operation that aims to facilitate bile drainage, is most successful when done before the patient is ninety-days old. Hayoon was almost eighty days old, placing her in the danger zone. The family was transported by ambulance to Seoul National University Children's Hospital, where Hayoon would undergo surgery.
"The most difficult thing initially was not knowing what was wrong,” Morrissey recalled. "When the diagnosis was finally delivered, we were quite relieved because there was finally a next course of action, which unfortunately, was invasive surgery."
Morrissey describes April 19, the day of the surgery, as extremely anxious for his family.
"We were told that Hayoon actually may not have biliary atresia and that the symptoms may be a result of her spine pushing against her liver, which would correct itself in time. If the spine was the culprit, the procedure would be no more than forty minutes. If it was indeed biliary atresia, it would be more than an hour."
"When the clock ticked past the one hour mark, our hearts sank: it was definitely biliary atresia."
The next difficult part was being told by leading pediatric surgeon Bak Kwi-won that the surgery was successful, but that Hayoon's heptobiliary (liver, gall bladder and bile duct) system was small, and that the results may "not be satisfactory."
Morrissey and Kim went to see Hayoon in the ICU with heavy hearts.
"She was awake, confused and whimpering, hooked up to various tubes and machines. I'm supposed to be her father, her protector, and there was nothing I could do to make her feel better. I guess I consider myself somewhat of a tough guy, but I was brought to my knees that day. I don't think I cried more in my life."
A fundraiser was organized and held at the Whiskey Weasel Pub in Ilsan to help cover Hayoon's growing medical costs. Friends and supporters packed the house, raising 2,000,000 won.
Three months later, Hayoon is back to her giggly self at home, keeping a schedule of monthly checkups, though her doctors are unable to tell what the future holds.
"Her surgeon and doctors said she's doing very well", says Morrissey. "While this is great, there's still the possibility that her heptobiliary system could begin to fail at some point in the future. If this happens, she'll need a liver transplant."
Upon reflection, Morrissey says he has learned to appreciate the solidarity of family.
"Each of us became an equally supportive shoulder for one another. We pulled together as a family and became inseparable."
The writer is a guest columnist from Ontario, Canada, and is currently living in Seoul. She welcomes topic suggestions from readers.