Liver Transplant: Josie’s Story

Soon after Josie was born, Jamie and Paul noticed a yellow tint to their baby’s skin. They asked each pediatrician they saw for advice, but neither was concerned at first. At Josie’s 4-month appointment, the doctor became worried and ordered an ultrasound and a test that would measure Josie’s liver function.

That evening, Jamie and Paul got a phone call with the results. They were told to take Josie to the Emergency Department at Children’s Hospital of Philadelphia (CHOP) right away. Her organs were enlarged and her liver function was dangerously poor.

Soon, hepatologist Elizabeth Rand, MD, was recommending that Josie be put on the United Network for Organ Sharing (UNOS) waiting list. The liver transplant team had spent two weeks evaluating her symptoms and running test after test, but they couldn’t find an explanation for the baby’s advanced liver disease. All they knew for sure was that her liver function was getting worse and that she would need a liver transplant to sustain life.

Just two days later, transplant coordinator Rebecca Miller, MSN, CRNP, called to say there was a liver that looked like a match for Josie. It was a shock for the family to get the call that quickly. Many families are on the transplant waiting list for months.

Josie underwent the surgery and was recovering in the Newborn/Infant Intensive Care Unit by early the next morning. But just as Jamie and Paul learned that an end to their fears was in sight, another family was beginning their own ordeal.

Finding comfort in tragedy

Lin and Ron of East Stroudsburg, Pa., were given the terrible news that no parent ever wants to receive. Their 20-year-old son, Ethan, had been in a serious car accident. He passed away that night.

In the midst of their shock, the Moyers learned that Ethan had registered himself as an organ donor. Doctors explained that his decision meant that his organs, bone, cartilage, blood and skin would all be used to save lives.

As soon as it was allowed, Lin, Ron and their daughter, Rachel, began writing letters to the seven people who had received a donation from Ethan’s body. It was therapeutic for them, a way to begin the difficult healing process following their devastating loss. They sent their letters through Gift of Life, the local organ procurement organization, which also manages communication between donor families and organ transplant recipients.

One of those letters went to Jamie and Paul, because Josie had received a portion of Ethan’s liver.

The two families began corresponding, exchanging letters and photos and sharing the details of their stories. The Lin and Ron explained that the other portion of Ethan’s liver had gone to a woman named Alberta Peters. Of the seven families they reached out to, they only heard back from the recipients of the two portions of Ethan’s liver.

Building new relationships

It wasn’t long before the families planned a day in the summer of 2012 to meet in person. “I was nervous that first time we met, even though we’d spoken on the phone and already knew so much about each other,” says Jamie. “They had lost so much, while we had so much to be thankful for. But that first meeting was just wonderful. There were lots of big hugs and they loved on Josie as much as they could. They brought her a blanket and toys that had been Ethan’s. There were tears when we all told our stories about what had happened that day, but I think everyone was happy to know that we were there for each other.”

For Lin and Ron, the relationships they’ve built with Josie, Alberta and their families are incredibly important.

“To meet these people has been phenomenal,” says Lin. “We are so blessed to have them in our lives — they’re like our extended family now. Alberta and Josie are healthy and happy, and might not have been if it hadn’t been for what happened to my son. A part of him lives on through someone else, and that is a beautiful gift to all of us.”

Ron adds, “He was such a peaceful, loving person and his death was tragic, but a lot of great things have come from it. He has helped so many people. We’d want nothing more than to have him back, but that’s just not possible.

“Now we understand so well that there are blessings in those difficult moments, and eventually you will find out what they are.”

Helping future transplant recipients

Now 10 years old, Josie loves animals. She rides horses, raises a cow for 4-H and tends to her family’s chickens and ducks. She enjoys reading and drawing, especially pictures of peacocks.

The specific cause of Josie’s liver disease has still not been identified, but the liver transplant team has been working with CHOP’s Division of Human Genetics in trying to identify potential causes. Throughout a decade of care, “The transplant team really follows up and guards her,” says Jamie.

To show the family’s enduring gratitude to that team and to help future liver transplant recipients, Jamie’s brother Tom Smeland recently decided to give back. During all of 2019, Tom’s real estate team in Bucks County had set aside a portion from each transaction, raising a total of $10,000. The funds will assist liver transplant families struggling to pay bills as well as serve as seed money to start research projects focused on liver disease. “The team will direct it toward where it’s needed,” says Tom, “so people who may not have the resources will be helped.”

A big festivity of lunch and a surprise for the whole transplant team was planned for March 2020 — and then the pandemic happened. Instead, in September they had an outdoors, socially distant get-together to present the check. For the occasion, Josie gave each member of the liver transplant team a painting she made.

“Josie was beaming from ear to ear the whole day,” says Jamie. “The whole team was there. We finally met the pharmacist! It was so overwhelming, a dream come true.” Then she adds: “How can you give back? There’s really no repaying. But it will help them care for more people.”

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