Story originally printed in the Westby Times or online at www.westbytimes.com
Published - Wednesday, October 15, 2008
Emma Freiberg walking for transplant awareness
To look at nine-year-old Emma Freiberg of Cashton today you’d never know that at the age of five months this bubbly young lady underwent a liver transplant, which not only saved her own life, but helped the donor family handle the emotional loss of their own child knowing the spirit of their son lives on through Emma.
Emma was born on May 16, 1999 in Madison to Bill and Mari (Wall) Freiberg. She was their first child and although she had a touch of jaundice at birth, the Freibergs, like the rest of the medical staff, believed her condition was temporary and within weeks her skin would return to a normal hue. As the weeks turned into months and her skin turned a deeper shade of orange, Emma’s pediatrician became concerned and scheduled a series of tests on the infant’s liver to check for infections or an underlying more serious health condition.
At the tender age of two months Emma was diagnosed with Biliary Atresia, a rare birth defect where the liver bile ducts are disconnected from the organ and unable to filter toxins out of her body. Biliary Atresia is so rare that only one in 10,000 children are diagnosed with the birth defect and the only known cure requires surgery to implant artificial bile ducts with a minimal success rate or an liver organ transplant.
At three months old Emma underwent surgery and had the artificial bile ducts installed, a procedure which was ultimately unsuccessful and lasted only a few days. With her health declining rapidly she was placed at the top of the organ transplant list in September 1999.
Mari Freiberg was all too familiar with the seriousness of her daughter's condition and the overall risks involved with being placed on the organ transplant list after her father, Alan Wall of Cashton, passed away two years earlier in 1997 while waiting for a liver transplant.
“Waiting and watching your loved ones fading is the worst. You feel helpless and that’s an awful feeling,” Mari Freiberg said.
The Freibergs daughter was failing fast and by mid-October she was placed in the hospital. Her skin was deep orange, her stomach had swollen to the size of a watermelon and she was retaining so many fluids that it was hard to recognize the little girl with the big smile who had no clue how close to death she really was.
With just a glimmer of hope left the Freibergs received word that an infant liver was located in Chicago and like the miracle they know it was today the organ was a perfect match for their five-month-old daughter who they knew in their hearts would never leave the hospital alive without a transplant.
On October 23, 1999, Emma underwent 10 hours of surgery where the liver of a one-year-old infant boy saved her life. Within hours Emma’s skin tone was improving, she was showing no signs of rejection and she was out of intensive care with 24 hours. Ten days later Emma was released from the hospital and into the loving care of her parents.
Once home Emma improved quickly and was soon weaned off the 12 medications and anti-rejection drugs she initially took after the surgery to the single pill she still takes today. To this day Emma refuses to swallow liquid medications and prefers pills, even what some people refer to as horse pills according to her dad.
“I’ve been swallowing pills since I was two years old. I can’t stand liquid meds. I just find it easier to swallow pills, even big ones,” Emma said.
The transplant procedure left Emma with a compromised immune system being unable to receive her series of vaccine shots and has to avoid situations where live viruses could be dangerous to her.
“I came down with chickenpox on the first day of summer vacation. I was in hospital isolation for five days. That was no fun, but at least I can’t get them back,” Emma said.
Emma’s miraculous recovery made her the perfect candidate for being a poster child for organ donation; the perfect candidate to bring awareness to the need for organ donation when at the age of two she handed out organ donation pins at the annual Harley Davidson Anniversary event in Milwaukee; the perfect lead-off pitcher for the La Crosse Loggers when she got to throw out the first pitch and the perfect princess for a day when she got the chance to have her picture taken wearing the Miss Wisconsin crown.
To this day the Freibergs look at October 23 as Emma’s rebirth day and they acknowledge the day by collecting coloring books and can tabs, which they take to the children’s hospital to mark their own miracle, while helping others during their time of need.
They count their blessings everyday and look forward every year to a family vacation at Wisconsin Dells where they meet with the donor family, Steve and Jeanette Levitt, whose one- year-old son, Andrew, died of spinal meningitis. Nine years later the Levitt’s have four children, but look at Emma as one of theirs knowing their own first-born son lives on through her.
“They are wonderful people and we can’t thank them enough. Without their generosity Emma wouldn’t be with us today,” Bill Freiberg said.
Today Emma is your average 4th-grader. She likes to play the piano, play basketball with her friends, read books and she loves to swim. In fact, she plans to participate in the 2010 Transplant Olympics in Madison if the timing is right. Physicians have placed few limitations on Emma, except restricting her from contact sports, a tough request with a rambunctious younger brother, Sam, in the house.
Emma is looking forward to participating in the 1st Annual VMH Support Transplant Walk on Sat., Oct. 18 at the Vernon County Fairgrounds in Viroqua. Registration begins at 8 a.m. with the walk kicking off at 9 a.m. Participation forms are available at the VMH Cardiac Rehab Center and at all VMH clinic and hospitals. Let’s help support and save lives by bringing awareness to the important need for organ donation.
All stories copyright 2006 Westby Times and other attributed sources.