Hayden Vanzandt – Biliary Atresia

The Challenge: A Rare Liver Disease

On Oct. 17, 2012, Heather Vanzandt gave birth to her son, Hayden.

“He was a perfectly healthy 8-pound, 6-ounce baby,” says Heather Vanzandt of Seneca, Pa.

And although he had jaundice and an elevated bilirubin level, his doctors weren’t too concerned. Jaundice is somewhat common in newborns.

“They said it would go away, but it never did,” she says.

At Hayden’s two-month checkup, the doctor said he looked sicker.

Heather insisted on a referral to UPMC Children’s Hospital of Pittsburgh for testing. She knows of their expertise since she works in the emergency department at UPMC Northwest.

“I thought it would be a quick trip,” recalls Heather.

Instead, doctors diagnosed her baby boy with biliary atresia. This rare, life-threatening disease of the liver and bile ducts affects only newborns.

“The doctors were very good. They calmly explained everything to us, but I was just devastated,” says Heather.

The Path to Living Liver Donation at UPMC

On Dec. 17, 2012 — just days after the diagnosis — Hayden had the Kasai procedure at Children’s. This surgical method restores bile flow by connecting the small intestine directly to the liver. But it's only a temporary fix.

“We were very fortunate that the Kasai procedure was successful, though. It gave him time to get healthy before the transplant surgery,” says Heather.

Back home with Hayden, Heather did her best to give him “a happy and somewhat normal childhood.” They had visits with family, took trips to the park, and went shopping.

In the summer of 2013, Hayden spent a week in the hospital with a fever and bleeding issues.

A fever could be a sign of a liver infection, which needs weeks of IV antibiotic treatments.

His enlarged liver put pressure on veins and blood vessels in his stomach, causing them to rupture sometimes. These conditions — called portal hypertension and esophageal varices — are quite common in children with biliary atresia.

Despite the health scares, Heather says they lived as normal as they could.

“After all he’d been through, we wanted to focus our attention on making Hayden happy,” she says. "When he was feeling good, you’d never know by looking at him how sick he really was.”

But by early 2014, Hayden was always sick. He had more fevers and minor bleeding and had a bout with the flu.

On March 20, Hayden suddenly began throwing up blood. He flew to Children’s where he went into cardiac arrest.

“That night was traumatic,” Heather recalls. “I don’t know how much blood he lost. I was just grateful that I didn’t lose Hayden.”

A Social Plea for a Living Liver Donor

With her son gravely ill and needing a liver transplant right away, Heather shared her plight with her Facebook liver support group.

“Within minutes, I got a message from Angelica,” recalls Heather. “She asked me about Hayden’s blood type.”

When Heather heard that Angelica was a match for Hayden, she was overwhelmed.

“I was just trying to process everything that was going on with Hayden. And now a stranger was offering to save my son’s life,” she says.

Angelica Fulton of Jamestown, NY, was a nursing student and mother of four-year-old Kaelynn. She knew Heather’s fears all too well since Kaelynn had a living-donor liver transplant at Children’s in 2011.

“Since I wasn’t able to donate for Kaelynn, I was determined to pay it forward,” says Angelica.

But Angelica's mother was concerned and asked her to reconsider. It was Kaelynn who kept her focused on helping Hayden.

“I kept thinking how sad we would have felt if my cousin had backed out on being Kaelynn’s donor,” says Angelica.

The timing was right, too, says Angelica.

“We were going to Pittsburgh the next week for Kaelynn’s yearly transplant checkup. I was able to have all the testing done then,” she says.

On April 9, 2014, Hayden had an eight-hour liver transplant surgery.

“The transplant team was amazed at how well he did,” says Heather. “He came up from recovery without a breathing tube, and he was up and walking 5 days after the transplant.”

Medicine quickly resolved Hayden's mild form of rejection post-transplant.

Angelica says she “felt great after the surgery and didn’t need any pain meds.” She pushed herself a little too hard, though, and ended up needing two months to fully recover.

“There’s a reason we say nurses often are the worst patients,” she laughs.

Heather stayed in Pittsburgh with Hayden for another month while he got better.

“My supervisor was really supportive, and we had tremendous support from the community. We did a GoFundMe page, and the local Pizza Hut® sponsored a fund. All these years later, people still ask about Hayden,” she says.

The Results: Going to School and Playing with Friends

Returning home after the transplant was a little overwhelming for the family.

“I had such a close relationship with the doctors and the transplant team, and I missed their emotional and medical support. But we settled into a new routine pretty quickly,” reports Heather.

Hayden, who is in kindergarten this fall, is doing well.

“He loves to play with cars and helicopters, basically anything with wheels,” she says with a chuckle.

And while he’s still a bit shy, he loves socializing, going to school, and playing with his friends.

“I’m incredibly grateful to the transplant staff and everyone at Children’s. They made it so much easier for us to get through this whole ordeal. They definitely care for and about their patients,” says Heather.