"Are you going to fix Aria's broken heart?" Noah, age 3, and Tristan, age 5, ask their sister's doctors. "They know Aria is really sick," says mom, Tara Grams. It's all still hard for Tara and her husband, Josh, to believe. "We were blindsided," she says. And the last three months have been a whirlwind.
Aria seemed healthy when she celebrated her first birthday back on May 20. Nine days later, however, she "went into cardiac arrest and collapsed," reports the Superior Telegram. Tara performed CPR until an ambulance arrived. Aria was brought to a hospital in Duluth, Minnesota, where an ultrasound "revealed Aria had an enlarged heart." She was then airlifted to a hospital in Minneapolis and "diagnosed with restrictive cardiomyopathy," according to the newspaper. Later, she was also diagnosed with dilated cardiomyopathy, and in early June developed heart failure. Aria was then placed on "a modified heart-lung machine called an ECMO" (short for extracorporeal membrane oxygenation), which provides temporary heart and lung function.
After learning their daughter would need a heart transplant, the Grams brought Aria to Mayo Clinic. "I'd heard great things about Mayo, and when we got here, I knew we'd made the right choice," says Tara. "Everyone here is great." Also "great," according to Tara, is Mayo's approach to caring for patients on ECMO. She's talked to parents in similar situations whose children are heavily sedated, unable to breathe or eat on their own. But Aria is eating and breathing on her own, and even doing physical therapy — "things that will help keep her strong for transplant and after."
She's also taken on a daily wagon or wheelchair ride, an outing that requires a six-person support crew to ensure her safety. "It's so good to have her out," says Tara, adding that music therapy has also been good medicine for her daughter. "If Aria's crying, she'll stop" when the music therapy starts, according to Tara.
Aria will remain dependent on the heart-lung machine until a donor heart becomes available. It's an agonizing wait, but one Tara says has been made easier by an outpouring of support from friends, family and even strangers. "I didn't know there were so many amazing people in the world," says Tara, reflecting on the gifts and letters the family has received. "I cry every time I read a letter. It's amazing how people reach out to try to comfort other people."
Not content to be just on the receiving end, Josh Grams has found his own way of comforting other patients at the Mayo Clinic Children's Center, even as his own heart is aching. Each night, he draws pictures (with permission and "window markers") on the glass doors of the hospital rooms.
"He talks to the parents to find out what the kids want," says Tara. "They call him the 'color fairy' because he does it all while the kids are asleep. It makes him feel good to do it." The kids seem to like it, too.
You can learn more about Aria on her Facebook page or by watching this video her dad made. (Have a tissue handy.) Then make us feel good by sharing your comments here on the In the Loop blog, where you'll find tools to share this story with others.