Sharing biliary atresia — and strength to beat it

Isabella and her sister Melissa, both have biliary atresia.Everywhere Melissa Villaseñor goes her little sister, Isabella, follows.

The 6- and 2-year-old share just about everything. They share big personalities. They share a love of being lively and loud. And, they also share something else — they were both born with biliary atresia.

“I am not going to lie,” says Andrea Torre, the girls’ mom. “I sometimes break down and cry and ask myself, ‘Why me?’”

Biliary atresia is a chronic, progressive liver condition that is fatal if left untreated. For most parents, having just one child with this rare, life-threatening disease is overwhelming.

“My husband keeps me grounded,” she says. “He reminds me, ‘See how much they fight for their health? We have to fight twice as hard.’”

Isabella who had a liver transplant last year is greeted by a clinician

Isabella’s liver transplant

When Isabella was a baby, she became sick after contracting an infection from a strain of bacteria called cholangitis. She was transferred from a hospital near their home in Rhode Island to Boston Children’s Hospital. Although the youngest and just 11 months old at the time, she would be the first of the two girls to receive a liver transplant. “She was very yellow, and her stomach was so big she couldn’t breathe well. I was so close to losing her.”

Boston Children’s surgeons Dr. Khashayar Vakili and Dr. Heung Bae Kim performed the life-saving procedure in July of 2015. Less than two years later, the oldest, Melissa, now is waiting for a transplant.

Every other month, Andrea and the girls — along with big brother Andres — make their way to Boston for Isabella’s clinic visits. And then, it’s Melissa’s turn for checkups.

“Honestly, I feel like a roulette wheel, going up and down and around all over the place,” Andrea says.

The Villaseñor family including Melissa and Isabella, both of whom have biliary atresia

Melissa: Waiting for her turn

Isabella is still too young to comprehend the impact of her illness, but her big sister is old enough. She notices things. She notices her stomach getting bigger as her liver grows larger and as fluids collect in her belly. She also notices her sister’s scar — she has one too — a much smaller one from a Kasai procedure when she was 8 weeks old.

“Why is my scar smaller than Isabella’s scar?” Melissa asks her mom.

“Because the doctors removed Isabella’s liver and gave her a new, healthy one, and they’re going to do the same for you,” explains Andrea.

“Oh, no,” says Melissa. “I don’t want that. Why?”

Her mom’s response is always the same — “Because you are special.”

The girls are at Boston Children’s for a routine Liver-Clinic visit. They are playing with pom-poms, giggling and being goofy, punctuated by shrieks of laughter.

“It hurts me seeing them sick,” says Andrea. “But then, I see this. I see them playing as if nothing is wrong and I think, if they can do it, so can I.”

Learn more about the Boston Children’s Liver Transplant Program.