John Michael and Margaret Rollins look over data on organ donations after a meeting of the Columbus Exchange Club at Lion Hills Center Thursday. The couple's daughter, Adeline, 2, was born with biliary atresia, a rare liver disease, and Margaret donated part of her liver to Adeline. Margaret spoke at Exchange Club about the importance of organ transplants in saving children's lives. Photo by: Isabelle Altman/Dispatch Staff
June 14, 2019 11:17:23 AM
Margaret Rollins is happy to report that her 2-1/2-year-old daughter Adeline now weighs two pounds more than her 4-year-old son.
It's not bad for a toddler who spent her first year of life in and out of hospitals, barely eating.
Adeline was born with biliary atresia, an incurable liver disease that affects 50 to 100 children born per year and requires liver transplants in about one-third of cases. When Adeline was 14 months, Rollins donated about 30 percent of her liver to her daughter.
Now Rollins and the rest of her family are advocates for organ donation, a cause Rollins championed at the Columbus Exchange Club's weekly luncheon at Lion Hills Center Thursday.
"Organ donation was not on my radar until it was," she said. "I was not even an organ donor until my daughter was born with this disease, and that's why I'm so passionate about advocating, because Mississippi is one of the least-registered organ donor states in the country."
As of Wednesday night, she said, 113,234 people in the country were on the waiting list for an organ, nearly 2,000 of whom are children, she said.
"There's a name added to the organ donor list every 10 minutes, and approximately 22 people a day die waiting on a life-saving organ that never comes," she said. "That's about 8,000 people per year, including children."
Adeline was initially on that list, Rollins said. Doctors at Children's Healthcare of Atlanta told the Rollins' that it wasn't usually difficult to get organs. Then Atlanta went through "a drought," and Rollins went through the surgery to save her daughter's life.
"She recovered quicker than I did," Rollins remembered. "... At the 11-day mark, she was a different child. ... It was like she was reborn."
Not everyone is as lucky. One doctor told Rollins and her husband that one-third of children born with biliary atresia die from the disease.
That's why she encourages everyone to be an organ donor, she said. About 25 percent of donors aren't blood relatives -- Rollins knows families who found donors through social media when parents weren't matches for children.
Rollins also dispelled several "myths" about donating organs. She said she's heard people claim they don't want to register to be an organ donor because doctors will not work as hard to save a donor's life, which isn't true -- doctors often don't even know the patient they're operating on is an organ donor. She also said it's usually families of the deceased individual who decide what organs the individual will donate, which includes organs and tissues ranging from skin and bone to the cornea -- the most commonly donated tissue, she said. One organ donor who dies can save up to eight lives.
Rollins added live donors can donate part of their liver, like she did, as well as kidneys, bone marrow and of course blood.
Rollins also talked briefly about her work to raise money for research into biliary atresia. She and three other "liver moms" in the Atlanta area hosted an art auction last month which raised $45,000 for the hospital's research into finding both the cause and cure for the liver disease.
"I'm not sure if you've ever seen someone in liver failure, but it is one of the most excruciating and painful ways you can die, and one of the most prolonged," Rollins said.
"Liver disease does not discriminate," she added. "It is not just a disease that affects adults that have done something to cause damage to their liver. It affects these babies that were born just wanting the basics in life ... and then they have to go through the unimaginable."
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