Biliary Atresia: Liver Transplant Saves Eric Fritz's Life
"His Little Body Held Out"
Shortly after birth, Eric Fritz was diagnosed with biliary atresia, a rare disease of the liver and bile ducts. He had surgery to open his bile ducts at 6 weeks old, and he received a liver transplant at age 2-1/2. He now spends his time zipping Hot Wheels" cars around the house and playing with his four older siblings.
Dave and Desiree Fritz live in a close-knit community in northeast Ohio with their five children, Audra, 18; Emily, 15; Hannah, 9; Adrien, 5; and Eric, 3. When they received the call that a donor liver was available for their youngest son, it seemed as though the whole town knew within an hour.
Eric Fritz was born jaundiced, with a yellow coloring in his skin. He spent a few extra days in the hospital under special lights to make the jaundice fade. His parents never thought it would lead to a much more serious condition.
At his one-month check up, Eric's pediatrician was still concerned with his jaundiced condition. The Fritzes, who live in Canton, Ohio, were immediately referred to a specialist at Akron Children's Hospital. Tests to rule out biliary atresia were performed. But each test led more conclusively to that diagnosis.
With Eric just over 1 month old, Desiree and Dave found themselves learning about the details of biliary atresia: how this disease would destroy Eric's liver; how only one in 15,000 infants is diagnosed with the disease each year; how it often leads to a liver transplant.
At 6 weeks old, Eric had a Kasai procedure to open a duct and allow bile to drain from his liver. He did well for about six months. But Eric started experiencing unexplained fevers that would send him to the hospital almost monthly for the next year.
Between hospitalizations, Desiree spent time learning about biliary atresia from other families.
"I found a supportive web site and read other families' stories," Desiree says. "I wanted to learn as much as possible." She found the Children's Liver Association for Support Services (C.L.A.S.S.) web site particularly helpful.
It Was Time to Travel to Cincinnati Children's
In the summer of 2002, the Fritzes could see Eric's condition was worsening. He wasn't growing or gaining weight. His doctor at Akron Children's decided it was time. He referred the family to Cincinnati Children's Hospital Medical Center for a liver transplant. "I had heard great things about Cincinnati Children's, and I didn't second guess the doctor's referral," Desiree says.
With Eric not yet 2 years old, Desiree, Dave, Dave's sister, and Eric made the four-hour trip to Cincinnati. The family underwent two days of extensive tests and meetings. Eric went through MRIs and exams, while his parents and aunt learned about the transplant process and fund raising. "I trusted Eric's professional care," Desiree says about their first visit to Cincinnati. "Everyone was so wonderful."
They then began the difficult process of waiting for a new liver for Eric. "We waited on the list about 13 months. Thankfully, his little body held out," Desiree says. The Fritzes were given a pager that would be called when a liver for Eric became available. At first, Desiree says, "I thought every little noise I heard was the pager going off."
During that year Eric had his struggles, living with an enlarged spleen and a dangerously low platelet count. This led to serious internal bleeding in his esophagus, a complication whereby he could have bled to death.
In December, Eric experienced his second bleed and was hospitalized for two weeks. "Our transplant coordinator at Cincinnati Children's [Libby Cox, RN, BSN] worked over the holidays to get Eric's status appealed," Desiree says, so Eric could be moved up higher on the list for a donor organ. "She was his special angel here on earth."
As a patient's condition changes, his or her status possibly can be upgraded by the United Network for Organ Sharing (UNOS). Libby made an appeal by sending Eric's latest blood work and other vital statistics to UNOS. Her efforts resulted in Eric moving higher up on the list to receive a liver.
Eight months later, the Fritzes finally heard the pager's insistent beeps. But at that time, "I ignored it," Desiree says. "I thought it was the TV." Then the phone rang and Dave answered it. Desiree knew right away what the call was about.
It was hard news to take. The Fritzes were relieved, but they also were well aware that another family was mourning the loss of a loved one.
Over Seven Hours in Surgery
On August 28, 2003, at the age of 2-1/2, Eric Fritz received his transplant. He endured 7-1/2 hours of surgery.
"Every two hours, the transplant coordinator or the chaplain would come out and give us an update," Desiree says. "We appreciated that." When she and her husband saw the surgeons come out of the operating room, they knew the procedure was over. They received the happy news that, while Eric's liver was quite damaged and difficult to remove, the transplant had gone well.
She and Dave went in to visit their youngest son. "There were tubes everywhere. We had to look for a place where we could touch him," Desiree says.
Most rewarding was what came next: Desiree saw Eric's blood levels coming down. Little by little over the next several weeks, they continued to decrease until they were normal. They had never been that way before.
Desiree and Eric were in Cincinnati for five weeks after the transplant. "Everyone took such good care of him, and they never got tired," Desiree says. "We were touched by the people. I had some incredible experiences with the medical professionals and the Ronald McDonald House personnel that changed my life."
During those weeks in Cincinnati, Desiree struggled with being away from her other children. But she had the reward of bringing Eric home and showing him off to his siblings. "He looked healthy," Desiree says. "He could wear pants. He could never do that before." Previously Eric had worn onesies, as pants wouldn't stay up on him due to his enlarged spleen. "Everyone bought him pants. He looked like a little boy."
Eric after his transplant with Ronald McDonald at the Ronald McDonald House in Cincinnati.
Life After a Liver Transplant
The first three months back in Canton, Eric's resistance to disease was low. Life at home required clean hands and constant use of hand sanitizer for the whole family. Eric also had his own basket full of medications. These weren't big lifestyle changes for the family, however, as they had been through this routine before the transplant.
Eric now gets blood work done by a home care service every two weeks. He has been back to Cincinnati Children's for two biopsies and an ultrasound, and returns for regular check-ups. He hasn't been hospitalized for a fever since his transplant. Even better, he has shown no signs of rejection.
His visits will get farther apart the healthier Eric becomes. He will return in August 2004 for his one-year anniversary, and his health care team at Cincinnati Children's will continue to follow him into adulthood.
The Fritz family doesn't hesitate to tell people about Eric's transplant. They are grateful to the family who donated his liver. And they acknowledge the positive aspects of this journey, including an immense appreciation they have gained for the many people -- both friends and strangers -- who helped them over the past three years.
Eric's siblings understand the extra attention Eric has needed. "The kids handled everything remarkably. I'm proud of them," Desiree says. In fact, Eric's experience has had a significant impact on his oldest sister, Audra. She graduates from high school this year and is considering a career in pediatrics.
Now 3 years old, Eric likes the outdoors, being read to and playing in the water. He may not yet have a grasp on how great a challenge he has faced in his life. But his family knows. And they're thrilled his little body held out.
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