In the early morning hours of April 23, 2016, Melanie Lilliston and Becky Williams each kissed their daughter for the final time. It was a Saturday, the end of a week that had started off as unremarkably as the one before it, and the one before that. On Tuesday, Williams had dropped off Millie, their gray-eyed, blond-haired 6-month-old baby, at day care in Rockville before heading downtown to her job at the State Department. Hours later, she received a frantic call from her wife. Millie was at Shady Grove Medical Center.
Now, four days later, they walked alongside their daughter’s hospital bed as it was wheeled down a hallway at Children’s National in Washington, D.C., where Millie had been airlifted due to the graveness of her condition. They couldn’t accompany her in the elevator because it opens directly into a surgical suite on a lower floor. As the doors closed, they gazed at her, knowing she wasn’t coming back.
“We knew this was goodbye,” Williams says.
The day before, Millie had been declared brain dead. Injuries sustained at the hands of her day care operator had proved too serious for the 14-pound infant, whose moms playfully called her Ladybug. Grief-stricken but resigned to her fate, her parents had made the difficult decision to donate her organs. “We couldn’t do a lot of things, but what we could do was try to honor her the best way we could, and we felt that her being generous and trying to help someone else was a nice way to honor her and remember her,” Lilliston says.
She’s sitting with Williams on a couch in the living room of their Twinbrook home on a cold and rainy November night. Flames are flickering in the fireplace, into which Lilliston often stares while recounting the heartbreaking last days of her daughter’s life. The surgery to remove Millie’s heart, liver and lower intestine marked the end of a nightmare from which neither woman will ever fully recover.
“What we’ve come to realize is that for someone else, that’s when their story starts,” Williams, 39, says. “There’s a baton passing that I didn’t fully appreciate or respect. We made our decision, we said goodbye to Millie, and then we went home. For someone else, a totally other story began.”
Ollie Marleaux is a lucky boy for no shortage of reasons. Among the more trivial is that he gets to celebrate his life with a party—and cake, of course—on both his birthday and on April 23 each year. That’s the date he received Miller Williams Lilliston’s heart. His parents, who live in Charlotte, North Carolina, have dubbed it his “heartiversary.”
Evan and Alice Marleaux sobbed when they heard that a heart had become available for their 7-week-old son, who would have died without a new one. The tears they shed were not all joyful. “I remember how grateful and happy I was, and also feeling this grief for a family that I don’t even know,” Alice says. “It’s a paradoxical feeling. You’ve been given a second chance at life that another child didn’t get. I don’t think I realized the weight of getting that kind of a gift.”
That emotional murkiness is one reason organ donation is not a topic many people like to discuss. It’s a conversation that forces people to confront their own mortality—or that of their loved ones.
“We’re both organ donors on our [driver’s] license, but other than that, it was not on the radar in any shape or form,” Lilliston, 40, says.
There are more than 114,000 people on the national transplant waiting list, and more than 2,400 live in the Greater Washington area, according to the Washington Regional Transplant Community (WRTC), the federally designated organ procurement organization for D.C., Northern Virginia, and several counties in suburban Maryland, including Montgomery. Another name is added to that list roughly every 10 minutes. About 20 people on it die every day.
“Those people are not waiting for a new medication to come out, they’re waiting for a family in the hell of their grief from losing a loved one to say yes to organ and tissue donation so that they have a chance to live,” says Matthew Niles, WRTC’s director of clinical services.
