Summer 2013

Case Study: Living Donor Transplant Is a Family Affair

Regacho family

The Regacho family

Like many newborns, Aidan Regacho spent some of his first hours in this world under the bili lights. When his bilirubin levels returned to normal, he and his family went home.

But at his 9-week well-baby checkup, the family pediatrician took one look at Aidan, ran some tests and then referred the infant to UCSF Benioff Children’s Hospital, where physicians quickly diagnosed biliary atresia. The next day, after a biopsy confirmed the diagnosis, Aidan’s parents, Marco and Angel waited anxiously while Aidan underwent a Kasai portoenterostomy, (named after the Japanese surgeon who developed the surgery, Dr. Morio Kasai ) to restore the flow of bile from his liver into his intestines.

Beyond the Kasai to Transplant

"Unfortunately, even with the Kasai, many patients will ultimately need a liver transplant because of progressive liver damage," says Sue Rhee, MD, medical director of the Pediatric Liver Transplant Program. That was the case with Aidan. Within a few months, he fell well below the average growth rate for children his age because his liver was failing.

"When the doctors started talking to us about transplant, I wanted to be the first one worked up [as a potential donor],” says Angel. In September 2009, two weeks before Aidan turned 1, Angel gave part of her liver to her son.

"Except for one short episode of rejection that put us in the hospital for his first birthday, he’s taken to the liver and the liver to him," says Angel of her son, who is now in preschool. "After the procedure, he just shot up, his energy was out of control and it was like he had been waiting to feel good.… He started walking three weeks after he came home."

Aiming to Remove Immunosuppressive Drugs

There is, however, one lingering concern. Since his transplant, Aidan has remained on immunosuppressive medications. "I saw a study about getting kids off of them, and I’m very hopeful we can do that with Aidan," says Angel.

"While a transplant is a lifesaving measure, the requirement of lifelong immunosuppression to keep a transplanted liver healthy has associated complications," says Rhee. But clinical research studies at UCSF have shown it is possible for some patients to wean completely off immunosuppressive drugs.

"Our hope is to better understand this process and help kids achieve normal growth, development and optimal health,” Rhee continues. "The great news is that since his transplant, Aidan has been able to thrive as an energetic, happy little boy."

"I have nothing but the utmost respect for the people at UCSF," says Angel Regacho, who recalls one night when a nurse gently asked her how best to wake Aidan for a middle-of-the-night vitals check.

"Later, I turned around and the lights were dimmed so he wouldn’t startle, and she [the nurse] was standing there, humming,” says Angel. "It was so calm and relaxing, and when Aidan woke up, he smiled at her.… We very quickly knew we were well taken care of."

     

Summer 2013 Table of Contents

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