December 15, 2021

Down syndrome patient celebrates anniversary of novel transplant

Vanderbilt patient Joe Eitl was among the first patients in the country with Down syndrome to undergo a heart and liver transplant.

The Eitl family poses with the plaque the family donated to thank the transplant team for taking care of Joe Eitl, who received a heart and liver transplant last year.
The Eitl family poses with the plaque the family donated to thank the transplant team for taking care of Joe Eitl, who received a heart and liver transplant last year. (photo by Susan Urmy)

by Matt Batcheldor

For Joe Eitl, Thanksgiving was more than just a day to get together with his family. It was also celebrated as his “second” birthday.

This year, the holiday landed on the first anniversary of Eitl’s heart and liver transplant at Vanderbilt University Medical Center — Nov. 25, 2020. Joe, now 38, was among the first patients in the country with Down syndrome to undergo a heart and liver transplant, and his story is featured in the documentary TV series “Last Chance Transplant” on the streaming service Discovery+.

To mark the anniversary, Joe and his family traveled from their home in Philadelphia to the Cardiovascular Intensive Care Unit (CVICU) at Vanderbilt University Hospital the week before Thanksgiving to donate a plaque inscribed with the names of the people who took care of him. The family wanted to thank the staff for all the care Joe received during his stay as a patient for more than six months.

“While we were here, we actually kept track of every nurse that took care of Joe, and we decided to do something for CVICU,” said Peg Eitl, Joe’s mother. “Obviously, we wouldn’t be here today if it weren’t for the help that we got from all of you.”

Eitl and his family traveled an incredibly long and arduous road to get to this point. He was born with a congenital heart defect, “really half a heart,” his mother said. When he was 7, he underwent a Fontan procedure, basically redoing the plumbing of his heart to enable him to live with a single ventricle (pumping chamber), instead of the normal two. While extending Eitl’s life, the procedure meant that his heart was pumping blood at a much higher pressure, which eventually took a toll on his liver, Peg said.

“He had more than 25 operations over his lifetime, and several of them were open heart,” she said.

By 2019, Eitl was in end-stage heart and liver failure. His doctors in Pennsylvania had exhausted all palliative measures and suggested placing him in hospice care because they felt he was too high risk for a transplant. His family began their quest and looked all over the country for a transplant center that might save his life.

“We had the records sent out — there’s probably only a dozen hospitals that have ever done a heart and liver transplant. Every one of them got Joe’s records,” Peg said. “The only hospital that actually was willing to meet Joe was Vanderbilt.” Hope was restored.

Eitl, along with his parents, Peg and Craig, traveled to Vanderbilt just as the COVID-19 pandemic was beginning to take hold in spring 2020. Instead of the typical week of tests and interviews, he was hospitalized for five weeks, but his condition was so poor at that point that he wasn’t considered a good candidate for transplantation.

“They told us that they couldn’t transplant him because he wasn’t strong enough to survive the surgery, but if we could reach certain milestones, they would reconsider,” Peg Eitl said. “I don’t think they ever expected to see Joe again. Joe went home very determined, as did we all. The efforts to get him stronger were in full swing. He started walking every day. He got himself to the point where he was off supplemental oxygen, and we were managing the edema.”

The family returned to Vanderbilt in October 2020 “and surprised a whole lot of people,” Peg said. Eitl was placed on the transplant list on Nov. 9, 2020, got the call that his organs were available on Nov. 24, 2020, and had his transplant on Nov. 25, 2020.

He wasn’t out of the woods after his transplant. He suffered from many complications, including a bile duct leak that required another invasive open surgery. He wasn’t eating well for a while and was challenged to communicate well with his care team because of his Down syndrome. “We started questioning if this was worse than what would have been, had we just done nothing,” Peg Eitl said. “It was tough.”

His parents, Peg and Craig, stayed with him in his hospital room much of that time with their own food, afraid to go anywhere that might bring COVID-19 to their son.

After six months in the hospital at Vanderbilt and another three months in a hospital in Pennsylvania, Eitl was finally released to go home in August 2021.

His transplant was something his family never expected to happen because of Joe’s Down syndrome. Peg said their doctors told them early in Eitl’s life that he would never qualify for a transplant because of it. Joe’s family is very thankful that Vanderbilt’s transplant team saw it differently.

“The people at Vanderbilt believed Joe was just as worthy as someone without special needs,” Peg said. “And that was what made the difference for us.”

Asked how he was doing the day of the plaque dedication, Eitl said, “better.” It took the better part of a year, but his recovery was finally something to celebrate.

“Mr. Eitl continues to inspire us with his strength and positive attitude,” said Seth Karp, MD, chair of the Section of Surgical Sciences, H. William Scott Jr. Professor and director of the Vanderbilt Transplant Center. “It has been our great honor to be involved in his care.”