When Angel Regacho brought her son, Aiden, home from the hospital, she had every reason to believe her newborn was in fine health; despite a day of observation for jaundice, doctors released him into the world with an all-clear.
Facing the diagnosis
Several months later, Aiden’s jaundice returned — and persisted. The Regachos were referred to UCSF Benioff Children’s Hospital, where Aiden, barely 2 months old, was diagnosed with biliary atresia, a rare liver disease in which, due to incorrectly formed bile ducts, bile is released into the bloodstream.
“We couldn’t go do things with him,” Angel recalls. “We had a huge hand sanitizer by the door, and if you had a cold, you didn’t come over. We were sheltered.” Despite his parents’ care and countless hospital trips, Aiden’s condition worsened, and, when he was 6 months old, doctors told the Regachos their son would need a new liver. Angel immediately offered to be the donor.
Preparing for surgery
As Angel waited for Aiden to be placed on the transplant list, she planned fundraisers to help with the cost of care. “It was pretty amazing seeing all of the support that we had,” she shares. “People posted on Facebook, so lots of people that we didn’t even know came out and donated money to help the cause. It felt good.”
Once her son was listed, Angel says, “[UCSF] got the ball rolling with me to go in and do all of my testing. It happened really quickly.” Within a couple of weeks, she was confirmed as a match and began to prep mentally and physically for the transplant.
Two weeks before Aiden’s first birthday, he and his mom went into surgery. Despite a rejection that held him in the hospital longer than planned, the transplant was a success. “You could just tell by watching him play and interact that he felt so much better,” Angel remembers.
Insisting on answers
The key piece of advice Regacho offers to parents going through a medical ordeal is, “Always ask questions. And make sure, if you do have questions, that you’re getting them answered and not just accepting everything that’s being told to you.”
Regacho’s inquisitive approach paid off in a big way when, thanks to relationships she built with doctors and nurses, she was informed about a study that ultimately enabled Aiden to go off of immunosuppressant medication.
Now, eight years after his transplant, Aiden is a happy, healthy 9-year-old. “If you were to talk to him or watch him play,” says Angel, “you would never know that he had been so sick for so much of the beginning of his life.”