According to Delaware resident Avrie Nelms, age 6, her favorite part of her body is her scars because “they help me keep alive.”
The scars were the result of a heart transplant that Avrie received as a baby. On Sept. 13, Avrie and her family will celebrate the fifth anniversary of her transplant. According to Avrie’s mother, Melissa Nelms, the celebration is “bigger than [Avrie’s] actual birthday because not everybody gets to celebrate when their life was saved.”
Things changed quickly when Avrie got sick. She was born healthy but, at about a year old, she caught a virus which usually results only in flu-like symptoms. In her case, however, the virus attacked her heart until the only option was a heart transplant. She coded twice while in the hospital before she received the transplant.
Avrie eventually became the first Nationwide Children’s Hospital patient to receive a Berlin Heart while she awaited a transplant. The Berlin Heart was not FDA-approved at the time and Avrie was only able to receive it once her life expectancy was declared to be below 36 hours. The Berlin Heart allowed her to survive until she was able to receive a donation.
“When she first had her transplant we didn’t know what life would be like and it’s just so normal, it’s so amazing,” said Melissa.
Jessica Petersen, Lifeline of Ohio’s media and public relations coordinator, said: “I’m just floored. From 36 hours of her life to first grade.”
“Transplant works,” she added.
As the Nelms family prepares for a joyful five-year anniversary, they are aware that the family of the donor “is remembering this five years for a completely different reason,” according to Melissa. “I would love for [the donor’s family] to see how wonderfully Avrie is doing and how lively and energetic she is.”
“Avrie’s here because that family was faced with an unthinkable tragedy and they were faced with that choice and they said ‘yes’,” said Petersen. Avrie is likely not the only person who benefited from her donor’s donation. A single donor can save eight lives and improve 50 more through organ and tissue donation, according to Lifeline of Ohio.
Lifeline of Ohio works to promote and coordinate organ and tissue donation. According to Petersen, the most frustrating aspect of her job is dealing with the myths that tend to crop up around organ donation. One of the most prevalent myths is that if an organ donor goes to the hospital, doctors will not save him in order to use his organs. This myth baffles Petersen who said, “It just doesn’t make sense. … Death has to be declared before organ donation can even be thought of.”
“If [the doctors] can save your life they will, no doubt, attempt to save your life,” added Melissa, who has also encountered this myth through her advocacy for organ donation.
More information on the facts behind organ donation and on how to register to become an organ donor can be found at lifelineofohio.org.
Avrie’s older sister, Macie, 9, spent the interview drawing a green chair. The message behind the drawing is a powerful one. “No chair left empty” is one of Lifeline of Ohio’s mottoes, according to Melissa. “The desire is that we get to the point where no one dies on the waiting list,” she explained.
Currently, about 22 people die each day waiting for organs.
Avrie’s parents are working to reach the “no chair left empty” goal by working with Lifeline of Ohio to encourage organ donation. Aaron Nelms, Avrie’s father, said he has found that once people “sat down with a representative and got the education on just what [organ donation] is all about and what the process is and how many people they can help, my experience is that they are much more comfortable.”
The Nelmses’ message for people who are faced with the option of organ donation is that donation can give recipients the gift of a full and happy life.
“It’s not like [Avrie’s] barely making it with her sick little body; she’s, like, thriving,” said Melissa. “She’s dominating this life,” she added.
While Melissa talked, Avrie illustrated the point. She ran around the room, bursting with energy. Later, outside on her swing set, she paused for a moment to say, “uh-oh, wet slide,” before smiling and, with characteristic flair, racing down the slide yelling: “Yay! Water slide!”
Megan Neary can be reached at [email protected]