Living, domino donors possibilities for Indiana Township boy in need of 2nd liver transplant

Lucas Goeller is getting another shot.

The 11-year-old from Indiana Township needs a new liver because the transplanted liver he received nine years ago is failing.

Normally, that could mean a lengthy wait on the donation list before a suitable organ is found. Lucas already is on that list. But doctors have two other options that could cut the time for Lucas to get an organ that could last a lifetime: a living donor transplant or a domino transplant.

Lucas is understandably nervous yet hopeful about what’s ahead.

“He’s incredibly excited to wake up from the transplant, play Nintendo Switch and order room service,” says his mom, Jessica Goeller.

Domino effect

Doctors at UPMC Children’s Hospital of Pittsburgh, where Lucas underwent his first transplant, said he could be the recipient of a domino transplant.

That’s a process in which a patient in more critical need of a liver gets one from a deceased donor. Then, the liver removed from that patient is transplanted into Lucas.

The organ could be fine for Lucas, because it would come from someone with a hereditary condition that he doesn’t have.

Lucas’ current liver failure stems from his first transplant, which fixed a blockage in his bile ducts but caused complications from incompatible blood types.

Children’s Hospital has performed domino transplants for at least 10 years, according to Dr. Kyle Soltys, a pediatric transplant surgeon. He has been a core member of Lucas’ medical team for about a decade.

Lucas’ doctors have a few candidates with maple syrup urine disease (MSUD), a genetic condition that prevents the body from producing enzymes needed to break down protein. Sweet-smelling urine is characteristic of the disease, giving the potentially life-threatening condition its name.

It can be practically cured by a liver transplant. While the liver represents only 10% of the body’s enzyme activity, that’s enough to substantially reduce levels of unwanted proteins in the blood even when other organs are not producing the enzyme.

Even though a liver from someone with the condition would not produce the necessary enzyme, other organs in his body do, making the livers good candidates for transplant.

“These livers are otherwise normal,” Soltys said. “In many ways, it’s an easier operation than a living donor.”

Soltys says there is no evidence that maple syrup urine disease can be transmitted through a transplant, meaning Lucas would not be in danger of contracting the disorder.

Lucas’ life

When a TribLive reporter visited the Goeller home recently, Lucas had no problem matching the rambunctious energy of his brothers, Jacob, 8, and Peter, 5. His 12-year-old brother, Cooper, was helping their father, Rick, in the garage.

Between the four boys, who’ve taken to jumping onto the couch from the stairs, furniture doesn’t last long in the house.

“It can be like a royal rumble,” Jessica Goeller said.

She described Lucas as positive, no matter the circumstance. He also is fond of fishing, hunting, playing with his brothers “and just enjoying family,” she said.

For the muddy trout season opener this month, Lucas went fishing with family at a nearby lake. The turkey season youth hunt, April 27, is marked on the calendar hanging in the Goeller’s dining room. He plans to bag a turkey on the family’s 13-acre property.

Related:

• July 1, 2021. Mom of liver transplant recipient Lucas Goeller recalls 'miracle' donation with mom of Nebraska girl who died
• July 2, 2015. Young Nebraska girl's organs give 2 Pittsburgh-area boys a chance to live
• Nov. 28, 2015. Indiana Twp. liver transplant recipient, 2, takes steps toward normal life

His dream is to one day take down an elk.

Still, chronic illness has taken a toll on Lucas. Jessica Goeller said Lucas has lost some muscle mass recently and experiences occasional pain from his enlarged liver.

“Thankfully, he’s still energetic,” she said. “I think everybody will worry when he loses the ability to be a participant in life.”

The liver Lucas has now came from a 3-year-old Nebraska girl, Olivia Swedberg, who died of brain cancer a day earlier.

A second transplant is needed, in part, because Olivia had a different blood type than Lucas’.

A coveted deceased donor also could become directly available to Lucas, but his Pediatric End-Stage Liver Disease score, a proxy for illness severity, places him relatively low on the transplant list. It likely would take a decline in his condition to bump him up that list.

A third option

If that happens before a suitable domino or deceased donor can be found for Lucas, he has a backup plan — and her name is Allison Hodas.

A resident of Erie County, Hodas met Jessica Goeller at Allegheny College in Meadville. They played together on the women’s basketball team there. They’ve seen each other only once in the past 20 years, but the bond between them remained.

Hodas heard of Lucas’ need for a liver, so she got screened to see if she could be a donor.

Lucas needs a donor between the ages of 20 and 49 with type O blood and a body mass index of less than 30.

“As soon as I saw that, and I saw that I fit in that requirement in terms of blood type and everything, I just signed up,” Hodas said.

After an extensive evaluation at UPMC Montefiore in February, including blood tests, a chest X-ray and several scans, doctors found the Fairview Township resident to be the perfect match.

“In my mind, any reason that I could think of to not do it, or any hardship that I would undergo, was temporary,” Hodas said. “It’s eight to 12 weeks of recovery compared to a lifetime he (would get) to enjoy now.”

To avoid getting hopes up, Hodas said she kept her screening a secret until she confirmed she was a match for Lucas.

The phone call that a potential living donor had been found came to Jessica Goeller last month while she was at work.

The transplant coordinator asked Goeller how Lucas was doing and then said the words the family had anxiously awaited for months: “We found a living donor for Lucas.”

“After that, I don’t remember much,” Jessica Goeller said.

What did stick with her is that an anonymous donor was willing to help Lucas live.

“At some point later, a friend had found me … with tears in my eyes,” Jessica Goeller said. “And I could only reply back the three things I remembered.”

The next day, Jessica Goeller got another call, this time from Hodas, who confirmed she was the donor.

“I had an enlightening moment, like, ‘Oh my gosh, I’m not surprised,’ ” Jessica Goeller said. “Out of everybody, I should have known it was going to be Allison.”

It sounds so simple: Take a piece of Hodas’ liver and transplant it into Lucas, where it eventually will grow to normal size. Hodas’ liver, too, would regrow to its normal size.

Of course, it isn’t that simple.

For all transplant recipients, there’s about a 1% chance of (blood) clotting issues, according to Soltys.

In living donors, transplantable blood vessels tend to be a fourth of the ideal size, raising the risk of complications. Plus, doctors must weigh the necessity of operating on an otherwise healthy person.

“I would never want to do a living donor who doesn’t have to do it,” Soltys said. “At the same time, it’s not a decision that we make.”

And those blood vessels do present a challenge. Domino transplants provide adequately sized blood vessels — or “plumbing,” as Soltys calls them — by way of the deceased donor. Doctors can’t remove all of the the blood vessels necessary for a transplant from a living donor, so another deceased donor has to be found to supply them.

Donors needed

While all of this could be good news for Lucas, more than 100,000 people are awaiting an organ transplant across the country, according to the Center for Organ Recovery and Education. In Pennsylvania, about 6,600 people are awaiting a transplant, with about 128 children in need of an organ.

Soltys would prefer the United Network for Organ Sharing, which calculates candidates’ rank on transplant lists, change its formula to open more opportunities for pediatric transplants.

“The people at UNOS don’t really discriminate by age,” Soltys said. “A 70-year-old is as likely to get a liver transplant as a 7-year-old.”

When donors are found, more often than not they’re deceased. This year, only 36 transplants in Pennsylvania have used organs from living donors, compared with 178 from the deceased, CORE data shows.

The Goellers hope to raise awareness of the need for organ donors through their Save Lucas campaign. They’ve taken to Facebook, TikTok, YouTube and Instagram, and Lamar Advertising donated about 10 billboards to the campaign.

More than 700 people have registered as organ, eye and tissue donors in Lucas’ name on RegisterMe.org.

There have been at least four occasions in which a family tried to donate a loved one’s liver to Lucas that wasn’t a match for him — but worked for someone else, possibly saving their lives.

“I’ve always been so thankful that God has given us this voice for organ donation awareness, because I know it’s helped so many people,” Jessica Goeller said. “Over the past nine years, I know that this story has saved a multitude of lives.”