New Liver Gives a Toddler a Renewed Chance at Life

Ocean Sintos is like most toddlers, playing with his toy trucks and big sister. He’s also a reflection of his name with his big personality (or as his mom, Angela Capillan, puts it, his bossy personality), and he has shown how strong he is from the day he was born nearly two years ago.

“It was about three days after birth when I noticed he was jaundiced,” she remembers. “When we were home, I kept thinking, ‘Why does he look so yellow, like glowing yellow?’ So I called my pediatrician and said, ‘I think there’s something wrong with Ocean.’”

Not only that, but he had a swollen belly and light-colored stools. All his symptoms were typical of his diagnosis: biliary atresia, a rare liver disease in infants where the bile ducts are blocked. If not treated with surgery, it can be fatal.

Biliary atresia is the leading cause for pediatric liver transplants. Stanford Medicine Children’s Health and the Biliary Atresia Research and Education (BARE) organization are holding a two-day symposium that aims to catalyze significant advancements in the understanding and treatment of biliary atresia for patients like Ocean.

“I cried because I knew that Ocean’s life wouldn’t be normal. I wouldn’t have a normal new-baby stage where we would be growing, learning together. Instead, right when they found out, they had to take him into surgery when he was only 2 months old.”

Unfortunately, the Kasai procedure, which is one of the treatment options for biliary atresia, didn’t work. He kept getting worse. Ocean needed a new liver.

An outreach program that gave Ocean a solution

The pediatric transplant team at Stanford Medicine Children’s Health leads a transplant outreach program at 11 different hospitals across six states: California, Nevada, Oregon, Washington, New Mexico, and Hawaii. In 2023, Stanford Children’s treated all the pediatric transplant patients from Hawaii as a result of transplant outreach.

“We know the farther a patient lives geographically from a transplant center, the longer it may take for them to be referred to a transplant center and the more sick they may become while waiting for a liver transplant,” says Noelle Ebel, MD, pediatric transplant hepatologist. “It is hard for families to leave home, their jobs, and figure out housing in a new place. That’s why it’s central to our mission to reduce liver transplant disparities for these children by having our team to go to them, so they can be seen closer to home initially until it is time to move closer to Stanford, to get the care they need before liver transplant. After a liver transplant, when children move back to their homes, we continue to make the journey to provide outreach follow-up care in their home states, alongside their excellent local teams. These patients become a part of our family.”

When Dr. Ebel met Ocean in Hawaii, he had already been on the transplant waiting list for five months.

“He had progressive liver disease and cirrhosis, which is the most scar a liver can have. I was most struck by how malnourished he was, which is a consequence of his liver disease, and it was time for him to come to Lucile Packard Children’s Hospital Stanford to help him grow as much as we could prior to transplant,” Dr. Ebel says.

On May 3, 2023, Angela, her husband, and their two kids hopped on a plane to California in hopes of getting a new liver for Ocean.

Receiving the gift of life

“I cried every day leading up to us leaving Hawaii,” Angela says. “We were leaving our family. The only people we had to lean on were each other.”

A week later, Angela got a life-changing call for Ocean. They had found a donor in the nick of time.

“Ocean was in dire need of a liver transplant,” says Carlos Esquivel, MD, pediatric transplant surgeon. “He was very ill and running out of time to wait for a compatible pediatric donor. We rarely get a pediatric donor. We had an offer for him from an adult donor that was his only chance for survival. We were able to use a small segment of the donated liver to save his life.”

A segmental liver transplant means the donated liver is split—the smaller part goes to a pediatric patient, and the other, larger part usually goes to an adult recipient or a teenager.

“There is no question that there are many patients on the waiting list, and there are patients who run out of time,” Dr. Esquivel explains. “A split liver approach increases the donor pool by giving two patients an opportunity to live. It is challenging, technically speaking, but we’ve been doing this for a long time and with excellent long-term outcomes similar to full-size liver transplants.”

Living, learning, and growing

Ocean is doing better now that he’s back home in Hawaii. He spent his first Christmas with his new liver at home, and while he still has weekly doctor’s appointments, Angela Wong, CPNP, RN, is keeping a close eye on him from Stanford Children’s.

“Ocean has been progressing well. We’ve been navigating his posttransplant care with his family, and he’s showing no signs of rejection of his new liver,” Wong says.

Not a day goes by that his mother, Angela, doesn’t think of the donor. Their family is forever grateful and hopes that others will learn more about becoming an organ donor.

“If there wasn’t organ donation, I wouldn’t have my son,” Angela says. “It really does save lives, especially for infants, toddlers, kids, who don’t know what life is. They’re fighting from when they’re born. Ocean deserves to live, learn, and grow. These are all things he can experience now because of a donor.”