The family poses for a photo at the 2010 Transplant Games
Photo courtesy of: Pam Brown
Emma Brown (second from left) poses with friends before participating in a local parade
Photo courtesy of: Pam Brown
Emma Brown shows off her medals at the 2010 Transplant Games
Photo courtesy of: Pam Brown
Dec 9, 2010
By George Mauzy
When their daughter Emma's skin turned yellow at school almost four years ago, Ohio University administrators Jeff and Pam Brown could never guess that the incident would change their life forever.
Pam Brown, director of Summer Sessions in Lifelong and Distance Learning, and her family have experienced ups and downs since that day in school. The journey that ensued has led her to become who she is today - a passionate advocate for organ and tissue donation.
The family's journey began in March 2007 when then-9-year-old Emma's skin turned yellow during gym class. After several visits to the doctor and hospital over the next two weeks, she was diagnosed with a probable case of hepatitis based on her symptoms and blood work.
Doctors continued to run tests in search of a better diagnosis and became extremely concerned when Emma's immune system wouldn't stop attacking her body.
This condition led to Emma showing symptoms of encephalitis, an inflammation of the brain that eventually left the young girl incoherent.
"This was a worrisome situation because her condition was becoming worse by the hour and the doctors didn't really know what was wrong with her," Brown recalled.
She said Emma's health continued to decline until doctors sent her to Cincinnati Children's Hospital for further tests because it was a major transplant center. In Cincinnati, doctors said Emma's liver was in decline and she would be placed on the national transplant waiting list.
"The whole transplant thing happened fast and was a shock to all of us," said Jeff Brown, a communication designer with the College of Osteopathic Medicine (OU-COM). "Pam and I had no time to discuss the transplant option among ourselves or with Emma. We were just reacting to what was happening at that moment. It was one of those situations that you thought always happened to someone else."
Because of Emma's critical need, almost immediately three livers became available. Exactly two weeks after she first became ill, doctors transplanted a liver from a recently deceased 18-year-old female with a different blood type into her.
Although the liver wasn't a perfect match, doctors realized brain damage to Emma was becoming more likely with each passing hour. They had to make their move. After a successful five-hour surgery, Emma emerged with a second chance and a new lease on life.
Pam Brown said she is forever grateful to Emma's anonymous donor, a young woman who probably died unexpectedly.
"We grieve for her and her family, but thank them daily for donating life to my daughter," Pam Brown said.
After more than a month of recovery in the Cincinnati hospital and the Ronald McDonald House, Emma returned home to Athens. Although she received a sea of get-well cards and stuffed animals, getting well and regaining her normal life was anything but easy.
Emma, who has an identical twin sister, Abby, and a 15-year-old brother Nick, came home with about 20 medications to prevent her body from rejecting the new liver.
She also wore a mask in public to reduce her risk of becoming sick from outside germs. She also became a frequent target of her peers' jokes because the steroids and medicines she was prescribed had caused her to gain significant weight.
"As parents, the whole experience was tough on us," Pam Brown said. "We tried to make Emma feel normal and didn't want her to be afraid. Now our challenge is to make sure she becomes increasingly more responsible for her health as she grows older because we won't always be around to take care of her."
The Browns now promote organ donation on a regular basis as ambassadors for "Lifeline of Ohio." The non-profit organization's mission is to educate and empower Ohioans about organ and tissue donation while facilitating the donation process.
In their role as ambassadors, the Browns regularly travel around the state, including schools, sharing their story and informing people how they can make a difference.
Pam Brown tells audiences that when someone donates their body, it has the potential to save eight lives and improve the quality of life for another 50 people. She lets them know that bones and eyes can be reused and even skin can be used in the treatment of burn victims.
"We're just out there letting people know that there are many people on the transplant waiting lists and many of them die on the list," Pam Brown said. "One of my goals is to get Ohio University student groups more involved. Many people don't know the facts about organ and tissue donation and it is now our job to educate them."
Emma Brown wins essay contest and trip to Rose Parade
Over the past several years, 13-year-old Emma Brown has become a proud organ recipient and advocate.
In August, she participated in the Transplant Games in Madison, Wis., where she competed in sporting events against other organ recipients. The games are held to show the world that organ recipients can live active and healthy lives.
Next year, she plans to start a website and blog to support sick kids on the transplant waiting list. She said it will also be a place where recipients can talk with other recipients about issues they are dealing with.
In September, judges from the 2011 Astellas Ride of a Lifetime Essay Contest chose Emma's essay as one of five national (one from each region of the country) winners from a pool of nearly 200 applicants. Judges chose the winning essays based on the powerful and touching stories the authors wrote about their transplant.
Contest organizers are hoping these stories inspire others to become organ and tissue donors.
The five contest winners will ride on the Donate Life float during the Jan. 1 Rose Parade along with 20 other people whose lives have been transformed by organ, eye and tissue donation and transplantation. The winners and their families also will meet other transplant recipients, work with the Donate Life team to decorate the float and attend special receptions honoring the transplant community.
The float's theme, "Seize the Day!," was chosen to inspire everyone to make the most of every moment to build dreams, friendships and memories with loved ones.
"I'm very excited to go to California and to see my friend Brittany, a heart recipient, who will also be riding on the float," Emma said.
The Browns will travel to Southern California with a party of eight, including Emma's immediate family, her maternal grandparents and Aunt Bethe. The family will participate in numerous Donate Life activities and do a few things of their own, such as sightseeing and attending the Rose Bowl football game.
"You see the Rose Parade on TV and always say you would love to attend it one day," Jeff Brown said. "The Donate Life staff has gone out of its way to accommodate us in every way. It is going to be a neat opportunity that we will always remember."