NYC Dad Gives Daughter New Life With Liver Donation

CROWN HEIGHTS, NY — Peter and Chris met at a Chelsea coffee shop in June 2004. Their conversation that night touched on something that’s often a relationship dealbreaker: Kids. And they agreed. Both of them wanted to be fathers.

“We didn’t know how it would happen at the time, but we knew that we wanted to make that happen,” Peter McKay said.

From that night on, Peter and Chris were a couple. In June 2010, they got married with plans to be dads together one day.

Three years after exchanging wedding vows, Peter and Chris stood together in a Poughkeepsie delivery room, holding hands with a woman who gave birth to a beautiful baby girl that the couple were set to adopt into their family.

“She was our daughter, from that first moment,” Peter said.

They named her Darcy.

Peter and Chris decided Darcy would share Chris’s surname, which they asked not be published to protect their daughter’s privacy. They brought Darcy home to their one-bedroom Crown Heights apartment on a quiet street, at least when the Franklin Avenue shuttle train isn’t rumbling by. Life was good.

It didn’t last.

Two months later, Darcy’s wide eyes had a yellow tint. Her skin, too. A check-up hinted at something serious. Darcy’s pediatrician recommended a liver specialist. Peter and Chris made an appointment for the next day.
A barrage of tests over more than a month revealed the truth — Darcy’s liver was failing.

Doctors diagnosed the baby with a rare genetic disease — progressive familial intrahepatic cholestasis type 2, or PFIC2 — that prevents liver cells from properly flushing out bile, forcing it into the bloodstream instead.

Untreated, the disease would shut down Darcy’s liver, doctors told the couple. Without a transplant, Darcy could die.

That’s a scary situation in New York, a state with a liver transplant list 2,000 names long and the nation’s shortest organ donor registry.

“The news was devastating and, as we learned more about it, we were just numb and heartbroken,” Chris, 35, said. “She was just a couple of months old and we absolutely adored her and had fallen in love with her, and here we get this news."

There was no evidence that Darcy's birth parents had the rare disease, which affects one in every 50,000 to 100,000 people worldwide.

Doctors at New York-Presbyterian’s Morgan Stanley Children’s Hospital said they thought Darcy might not need a liver transplant until high school or college. In the meantime doctors prescribed medicine and made plans for surgery.

Bile in Darcy's bloodstream caused her constant, intense itching. At eight months old, she would drag her chin against her chest in search of relief. Chris and Peter would put a bandage on her chin and dress her in special clothes that aimed to keep her from scratching her skin raw.

“She would sit there and just writhe all the time, and she would always be moving because she was always itchy,” said Peter, 38. “It was heartbreaking.”

When she was about a year old, Darcy underwent surgery that aimed to push bile away from her bloodstream into a bag attached to her body that her dads would empty a couple times each day. Darcy’s health improved after the surgery, but it didn’t last. Doctors said the transplant couldn’t wait.

Peter and Chris had to make a decision.

They could have added Darcy’s name to the 2,000 others on New York State's liver transplant waiting list, which comes with this grim statistic: A New Yorker waiting for an organ transplant dies every 18 hours, according to LiveOnNY, an organ donation advocacy group.

But Darcy’s doctors offered another option — a living-donor liver transplant. The procedure involves replacing the diseased liver with a portion of the donor’s healthy liver. Over time, the healthy liver grows to be full size.

That option would eliminate a long wait for a transplant. All they needed was a willing donor who was a match. Doctors suggested Chris and Peter get tested to see if one of them might be the donor to save Darcy’s life.

“It wasn’t even a question,” Peter said.

They got tested. Both dads were a match.

“It felt so freeing,” Peter said.

They had hope.

The Transplant

The couple decided that Peter would donate part of his liver for practical reasons — his job as a regional admissions officer for Lewis & Clark College in Oregon let him take more time off than Chris, who works in entertainment marketing.

But it was also a chance for him to to share something special with Darcy, just as Chris had shared his last name with their daughter.

“I think when some people donate liver, or donate any organ, there might be a little bit more hesitation in terms of, why am I doing this, how is this going to affect me later on, what are the financial implications?” Peter said. “All of these things that go into this decision-making process, I didn’t have to go through all of those, because I knew that I would do whatever it took.”

Darcy soldiered on through the next few months as Peter and Chris prepared for the worst. Their daughter could die without the transplant. But even with the surgery survival wasn’t guaranteed — for Darcy or Peter.

"Initially we sort of went through another period of mourning, because inherent in the surgery is a very small risk, as with any surgery, that the patient could die," Chris said. "And so we had to have a real conversation about what that could look like."

Chris sat nervously with his sister on June 30, 2015 as surgeons, over seven hours, removed Darcy's liver and replaced it with a portion — about 15 percent — of Peter’s liver.

Chris took walks and read to take his mind off the what was happening in the operating room.

“I really trusted the doctors that were operating on both of them and so, from that point of view, I felt sort of as comfortable as I could have been,” Chris said.

Peter spent about five days in the hospital recovering from the transplant. Darcy stayed for a week. Chris camped out with Darcy, taking frequent walks through the hospital’s hallways to visit Peter.

A few days after the surgery, Peter got to see Darcy for the first time.

“I was just looking at her and just thinking about the fact that she has a future now,” he said. “I was never thinking about myself in that process. It was really about, she now has what she needs in order to be a little girl, and it was amazing to be a part of that.”

Darcy’s was one of the 20 to 25 living-donor liver transplants New York-Presbyterian’s surgeons perform each year, said Dr. Benjamin Samstein, the chief of liver transplants at New York Presbyterian Weill Cornell Medical Center. Children are the recipients in about half of them, with parents being the donors in about 75 percent of those cases, he said.

Her transplant saved two lives, Samstein said, because it gave someone on New York’s long transplant list a shorter wait.

“Peter, yes, he saved his daughter, but he also saved a beautiful child who will grow up and have an opportunity to grow up and live a normal life,” Samstein said. “And I think it’s one of the fantastic things about transplant, is that all of us have the ability to save lives in the same way.”

Darcy was up and running around within a couple weeks after the surgery. Peter also recovered quickly. He went back to work in six weeks.

Immediately after the surgery, Darcy took a dozen medications, but now takes just one. She’s healthy and doctors expect her to live a long life, Peter said.

Darcy started preschool in Crown Heights this fall and celebrated her fourth birthday in September with a “The Wizard Of Oz”-themed party. She’s a big sister now too. Her baby brother Sebastian turned 1 in August.

Darcy doesn’t remember how she suffered as a baby, but she’s got permanent reminders of the surgery that saved her.

The scars on Darcy’s chest look like a peace sign. Peter’s belly is peppered with tiny indelible marks.

Some nights, at bathtime, Darcy and Peter compare the scars that give them a unique biological bond, and linger as a reminder to focus on what their daughter nearly lost — an amazing future.

Watch Now: NYC Dad Gives Daughter New Life With Liver Donation

(Lead image: Peter McKay visits his adopted daughter, Darcy, after giving her part of his liver in a living-donor transplant in June 2015. Photo courtesy of Peter McKay)