Throughout Gift of Hope’s 30-year history, it has held steadfast to its vision that every opportunity for donation is successful in order to achieve its mission to save the lives of as many people as possible through organ and tissue donation. The organization and its partners work diligently to make donation happen for donors and their families, but sometimes donation is not possible. In these instances, challenges turn into opportunities.
In 2016, Chicago’s Ann & Robert H. Lurie Children’s Hospital and Gift of Hope recognized the need to collectively rebuild and strengt
hen the shared donation process involving pediatric donors. This undertaking required trust, commitment, hard work and dedication on the parts of both organizations. But what or who was the impetus for this realization and important collaboration?
It was a 10-year-old boy named Aidan Shea, who passed away on Dec. 10, 2015. He became the catalyst for change that forged a strong partnership between the two organizations, a partnership that continues to help honor the decisions of pediatric donor families and save lives through organ and tissue donation.
Aidan was born on Oct. 29, 2005, and came into the world with a built-in best friend, his twin brother Connor. “We were desperate for a baby, and then we had twins, which was even better,” said Theresa Shea, Aidan’s mother. “We were super excited.”
In an unexpected turn of events, Theresa became pregnant almost immediately after giving birth to the twins, and so two became three — Aidan, Connor and Liam. Theresa and her husband, Kevin, moved their new family to a home in a Chicago suburb, and life for the Sheas was a whirlwind of adventures and joy. Ten years later, they would find themselves in the midst of every parent’s worst nightmare.
Over the weekend of Dec. 4, 2015, Aidan and his family enjoyed a full, fun and active weekend. On Saturday, Dec. 5, they attended a family party where Aidan and his brothers raced around and played video games. On the morning of Sunday, Dec. 6, Aidan participated in a swim-a-thon, and, later that day, he and his brothers went to religion class where Aidan did something that was out of character.
“Aidan raised his hand in the middle of the class even though there were 300 or so people there, which was very unlike him,” Theresa recalled. “He asked if he could do a reading in front of everyone. He had a habit of sticking his tongue in the side of his mouth when he was proud. So, he was beaming up there, just so proud. It was a good morning for him.”
Later that day, Kevin dropped off Aidan and his brothers at choir rehearsal, but, shortly after, Aidan told Connor and Liam that something was wrong. He felt extremely sick and needed to lay down. The boys immediately called their father, and, when Kevin arrived, Aidan was lying on the floor and told his father he could see him, but could not hear him. Theresa, who was at home resting because she’d been up since five that morning to accompany Aidan to swim class, clearly remembers the two back-to-back phone calls she received at approximately 1:15 p.m. that day.
“I was taking a nap, and I didn’t answer either time,” Theresa said. “But then I couldn’t go back to sleep, so I went downstairs, and there was a phone message from Kevin saying something was wrong with Aidan and that he was driving him to the hospital.” Theresa called Kevin back just as he was pulling into Elmhurst Memorial Hospital and could hear him yelling for help. Within five minutes, she arrived at the hospital to find that doctors had resuscitated Aidan.
Theresa and Kevin had Aidan transported to Lurie Children’s Hospital where doctors confirmed the initial diagnosis. Aidan had an arteriovenous malformation, an abnormal tangle of blood vessels connecting arteries and veins in the brain, which disrupts normal blood flow and oxygen circulation. “We knew it was bad from the get-go,” Theresa said. “The doctors were being positive and trying to keep the family hopeful. But Aidan barely made it through the night. He coded and was resuscitated several times.”
After a second MRI was done, Theresa and Kevin decided they had to let Aidan go. Dr. Marcelo Malakooti, who cared for Aidan and his family all week, told the Sheas that someone from Gift of Hope was there to speak with them. Theresa and Kevin knew a fair amount about organ and tissue donation from past family experiences and were open to discussing donation with Gift of Hope.
“Aidan was super hilarious and very generous almost to a fault,” said Theresa. “If a kid was playing with his toy, he would say, ‘Take it home with you.’ no matter what it was. Kevin and I spent about five minutes talking and said, yeah, this is what Aidan would want. Aidan who literally gave kids the shirt off his back — this would be so meaningful to him.”
Theresa and Kevin established a timeline for Aidan’s brothers and the rest of the family to say goodbye to Aidan and have him removed from ventilator support. Unfortunately, it quickly became apparent that it was going to be very difficult to make donation happen in the time necessary.
“We felt sad because we know how much it
[donation] would have meant to him,” Theresa said. “Even if the doctors who didn’t wantto give up on him had said, ‘If there was any sliver of a chance he doesn’t make it, would you want to talk to Gift of Hope?’ the answer would have been ‘yes.’ I think some families can address parallel outcomes. If we had that opportunity earlier in the process, maybe that would have helped line things up to make donation possible.”
A PROFOUND AND LASTING IMPACT
“Aidan’s case had a profound impact on our entire staff at Gift of Hope,” said Kevin Cmunt, Gift of Hope’s President/CEO. “Because of Aidan, we rededicated ourselves to pediatric donation, rebuilt our partnership with Lurie Children’s Hospital and dedicated the following year to the memory of Aidan.”
In the year after Aidan passed away, Lurie and Gift of Hope worked together to develop a donation committee, update policies, increase education efforts around donation and implement programs across the hospital’s departments to create a culture of trust and open collaboration between the two organizations. That is how Aidan, a fan of Greek mythology who one day hoped to join the United States military, had a direct and lasting impact on the experiences and stories of future pediatric donors and their families.
In 2017, as a result of the new initiatives implemented by the two organizations, Lurie had nine organ donors and helped Gift of Hope recover 29 lifesaving organs for transplantation, far surpassing the hospital’s donation activity for the previous five years combined. Aidan became what Gift of Hope calls a “donor in spirit.” Although donation was not possible for Aidan and his family, his generous nature and their desire to donate on his behalf had a memorable and lasting impact on pediatric donation.
“The impact Aidan has had on so many people has given us a lot of comfort,” said Theresa. “I think about the people who have heard his story and that so many lives have been saved. I can see the smile on his face and that brings me peace and makes me feel like he’s impacting people like he would’ve wanted.”
After Aidan’s passing, his family established a private not-for profit foundation in his name, and every year they raise funds for Gift of Hope, Lurie Children’s Hospital and the library at Jackson Elementary School in Elmhurst, Ill., where Aidan was a student.
“We don’t want everything to be about his illness, which was only five days of his life,” said Theresa. “A lot of Aidan’s happiness came from the books in his school’s library. We hold events twice a year to celebrate Aidan, remember him and raise funds at the same time. It’s been a real positive thing for our family.”
To learn more about Aidan’s story, visit the Adian Shea Foundation Facebook page, or email firstname.lastname@example.org.