Twinsburg teen thrives after liver transplant as a baby
TWINSBURG — Playing sports. Going to school. Hanging out with siblings. Performing on bass guitar. Honing tae kwon do skills.
These are the types of activities many parents can take for granted for their children, but not Twinsburg residents Heather and Jeff Diederich. Their oldest son, Aidan, had to undergo a liver transplant when he was barely 1, and had to overcome several hurdles afterward.
Aidan was the first emergency live liver donor transplant at the Cleveland Clinic, and the 16th in the country, said Heather Diederich.
“It was very unchartered waters, for sure,” Heather said.
Today, Aidan, 14, is an active teen who enjoys a variety of activities. Recently, he performed with several other musicians outside the Transplant House of Cleveland to help raise funds for the facility, which provides temporary housing for organ transplant patients and their families.
“They had wanted people who had had transplants to play,” Heather said. “They had invited Aidan to play a set, but then there was COVID, and it was canceled. But later, he played in a mini-concert outside for part of an online fundraiser instead of in-person.”
Vince Menti, who is Aidan’s music teacher, said the event “was so beautiful.”
“We performed for families that have been staying at Transplant House for months waiting for organs,” Menti said. “Heather Diederich shared a heartwarming story of her brother Jeff stepping in to donate for Aidan 13 years ago.”
Aidan said that while he was initially nervous at the thought of performing before an audience, he enjoyed the opportunity.
“It was awesome,” Aidan said. “I loved doing that because I’ve been through it. It was so nice to meet people who are going to have it, and it helps give encouragement. It really made me happy.”
First birthday: 'Pretty much on his deathbed'
Everything happened quickly.
“He had turned 1 on Saturday, we found him pretty much on his deathbed Tuesday morning, and he was transplanted Thursday,” Heather Diederich said. “The day Aidan became ill, we were celebrating the fact that I was pregnant again.”
Heather said that when she and her husband had put Aidan to bed Monday evening, everything seemed fine. But by Tuesday morning, it was quickly apparent that their little boy was seriously ill.
“He went from completely healthy and normal to being jaundiced and ashy gray the next morning, and heading into a coma,” Heather said.
Heather said she and Jeff had been making breakfast to celebrate the coming new addition to their family when they went to get Aidan, whom they found lethargic. Jeff, who is a firefighter-paramedic with the Bedford Fire Department, picked him up, and Aidan barely opened his eyes. Heather called 911, and Aidan was transported by ambulance to Hillcrest Hospital, where hospital staff started administering fluids and sugar.
“Initially, they thought it might have been pediatric diabetes,” Heather said. She added as time went on, the staff in the ER said little, but she suspects they might have known that Aidan was in liver failure “but they didn’t want to alarm us.”
Hillcrest had Aidan flown by medical helicopter to the Cleveland Clinic Children’s Hospital PICU unit, where Heather and Jeff were told that Aidan was in acute liver failure.
“Jeff nearly passed out, and I just lost it,” Heather said.
The staff at the pediatric intensive care unit put Aidan into an induced coma.
“They wanted Aidan’s body to do the least amount of work,” Heather said. “He was placed on a transplant list Tuesday evening. I think a liver came in that night, but it was nonviable.”
By Wednesday afternoon, Aidan’s health started to deteriorate, Heather said. The toxins from his liver were not only shutting down his kidneys and lungs, but his brain started to swell.
“We actually lost him, but the staff at the hospital were able to bring him back,” Heather said. However, by evening, she and Jeff were told that Aidan would not make it if he didn’t receive a transplant, and soon. “He was really rough.”
A rush of tests: Finding a match for a liver transplant
It was suggested that a live donor transplant be tried, Heather said. Heather was unable to donate because she was pregnant, and the possibility of losing both Jeff and their son would have put Heather and their unborn baby in a bad situation. So, Heather said, they went to the waiting room, where about 20 people were waiting, and asked if anyone would be willing to be a donor.
“We had 12 people come forward who were willing to donate,” Heather said. “God bless every one of them.”
The prospective donors were all given the requirements on what it would take to donate, Heather said, which included age and weight restrictions. Also, Heather and Jeff agreed that no one with children would be accepted due to the high risk of the surgery. Because this was an emergency donor situation, risk of death was as high as 40%. “We couldn’t have their family in our situation,” she said.
After initial screenings, it came down to Heather’s brother Jeff Shoemaker and Aidan’s godfather. After some discussion, Heather’s brother was selected. Late Wednesday night, Shoemaker was taken to the sixth floor of the hospital “to pack in six weeks’ worth of testing in less than eight hours.” Shoemaker wound up being a perfect match, Heather said.
The next morning, Aidan and Shoemaker underwent the surgeries, Heather said.
“Aidan was wheeled down for surgery around 6 a.m.,” Heather said. “The surgery lasted 13 hours. Over 30 people waited with us for the procedure to finish.” Heather added that the Bedford Fire Department “catered lunch and everything.”
Heather said the surgeons discovered that Aidan’s old liver had already died.
“They said they didn’t know how he even made it through surgery,” Heather said. “His old liver was shriveled and rock hard.”
After the surgery, Aidan required about a month for his body to recover, which is three weeks longer than the average, Heather said. In addition, he had issues with his bile duct, which required 17 stent surgeries to help enlarge it. He also had to contend with numerous viral infections. After about 18 months, most of that time in the hospital, Aidan came home.
To this day, no one knows why Aidan’s liver failed, Heather said.
“Everyone was kind of scratching their heads,” she said. Speculation ranged from accidental ingestion of some sort of medication or oil to a viral infection to genetics, but the results were always inconclusive.
“We tested for many things but it always came back negative,” Heather said.
Aftermath of the liver transplant surgery
Heather said the medical staff warned that, even after their son had recovered from his surgery, he still could face many obstacles.
“Because of the brain swelling, we were told he may never walk or talk,” Heather said. “He did have some delays in talking, but we got him into speech therapy. When he was 3, we moved to Twinsburg and got him into the integrated preschool, where he had speech therapy four times a week. By the time he was in first grade, he was doing well and we were done with speech therapy.”
All in all, after the first couple years after the surgery, “he’s been good to go,” with only a few minor bumps in the road, Heather said. He still goes to the Cleveland Clinic twice a year, once in the spring and once in the fall, where he stays for a week to undergo tests. Otherwise, “you would never know how sick he was.”
How is Aidan doing today?
Today, Aidan is a middle school student who has a variety of interests, including playing video games, playing basketball and baseball, running cross country, having fun with his friends and hanging out with his two brothers Sullivan, 12, and Declan, who will turn 8 on Thanksgiving Day. He said he also enjoys boating and riding on stand-up paddleboards.
Aidan said he especially enjoys listening to and playing music. Besides bass guitar, he studied violin for three years and currently plays double bass. Aidan plays in his school’s orchestra and jazz band.
Metallica, Aidan said, is one of his favorite heavy metal groups. “I loved Metallica as a kid, it was all I listened to,” he added.
Heather said when Aidan expressed an interest in learning bass guitar, another musician, Jeff Cousins, “who has toured with multiple bands, had a bass he wasn’t using.” He fixed it up, and the family bought it and gave it to Aidan as a Christmas gift.
Aidan isn’t the only musician in the family; younger brother Sullivan plays drums and also performed at the virtual fundraiser for the Transplant House of Cleveland.
When the new school year started, Heather said she and Aidan met with his team of doctors to go over the Twinsburg school district’s safety protocols to decide whether Aidan would go in person, or if it would be better if he took classes virtually.
“Aidan [is a] healthy kid, and 13 years post-transplant,” Heather said of their decision to let Aidan attend classes in person. “They were very, very pleased with everything Twinsburg put in place.”
The family takes other precautions, Heather said. “They all wear a mask, sanitize their hands. Also, after they come home, they change their clothes and wash them. Aidan, in his words, when asking about returning to school, told me, ‘I just want to be around people. I miss people.’ ”
Menti, who owns Family Learning Center For Music in Twinsburg, said Aidan “has truly overcome life's early obstacles.”
“He just swings the bat every day,” Menti said. ”I have been teaching for over 35 years, and students like Aidan just bring out the best in everyone. He seems soft spoken and shy at times, but when he is on stage with his bass in hand, it is a totally different person. His energy is amazing. He and his family are truly good people.”
For details, visit the family’s Facebook page at Aidan’s Army.
Reporter April Helms can be reached at firstname.lastname@example.org.