Liver Transplant: Josie’s Story

Soon after Josie Crawn was born, her parents, 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, Jamie took her back to the doctor who had first seen her as infant. Now the doctor was worried, and ordered an ultrasound and another test that would measure Josie’s liver function.

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

josie It was the night of Oct. 14 that they first brought Josie to CHOP. By Halloween, 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 condition was only getting worse as time passed and that she would need a liver transplant.

Just two days later, transplant coordinator Rebecca Miller, MSN, CRNP, called to say there was a liver that looked like it would be 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 was taken into surgery on the evening of Nov. 2, and was recovering in the Newborn/Infant Intensive Care Unit by early the next morning.

The night of Nov. 2, when Jamie and Paul found out that an end to the uncertainty and fear they had endured for two weeks was in sight, another family was just beginning their own ordeal.

Finding comfort in tragedy

Lin and Ron Moyer 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 at Lehigh Valley Hospital.

In the midst of their shock that night, the Moyers learned something about their son they had never known: 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 their daughter Josie had received a portion of Ethan’s liver.

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

Building new relationships

Soon the families started talking on the phone, and it wasn’t long before they 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, when our families got together, was just wonderful," Jamie says. "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. Everyone was just so happy to get to know each other.

"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.”

The three families plan regular reunions and talk on the phone about once a month. Ethan’s sister, who Josie now calls Aunt Rachel, will have the 2½-year-old as a flower girl in her July wedding.

A few months ago, Josie’s father renewed his driver’s license. When he came home he proudly held it up for his wife to see: “Look what it says — I’m an organ donor.”

Originally posted: April 2013