After their life-saving liver transplants mother and daughter are happy to be home.
As Mother’s Day neared, Georgina Barba wasn’t making any provisions.
“I don’t really plan anymore, because then something ends up happening,” says the 36-year-old Carson, California, mother of three. “The main thing is that we will all be home.”
Mother’s Days, Father’s Days, birthdays, Christmases… Barba is hard pressed to come up with a single occasion that she hasn’t commemorated in the hospital at some point over the last two decades.
In December of 2000, when Barba was just 17, she came down with what she figured was food poisoning. When her skin turned yellow and she began hallucinating, Barba knew that wasn’t it. The next few weeks were a blur. Barba was admitted to the emergency room, then sent to UCLA, where tests revealed severe liver damage. On Feb. 9, 2001 — the day she turned 18 — Barba was listed for a transplant. She had the life-saving surgery two weeks later.
A period of relative of normalcy followed — although, with the slew of immunosuppressive medications swirling through her bloodstream to prevent Barba’s body from rejecting its new liver, she steered clear of crowds or anyone with so much as the sniffles. Barba had been told that any post-transplant pregnancy would be considered high-risk, so when she and her husband welcomed their daughter Natalia in 2009, they were ecstatic. Three years later came twins — a boy, Cristian, and a girl, Giuliana.
In April 2014, during Giuliana’s 18-month well-child visit, Barba mentioned to her pediatrician, Dr. Negar Ghafouri, that her daughter didn’t seem to be hitting the same developmental milestones as her siblings, and hadn’t gained any weight in awhile. She wondered if a family history of thyroid problems might be to blame. Routine blood testing showed something else — Giuliana’s liver enzymes were elevated. It felt like a second strike of lightning. “All I could say was, ‘Not again,’ ” Barba recalls.
Giuliana underwent a series of tests and was hospitalized for two weeks before being discharged, only to return two months later — this time for nearly three months, during which she was listed for a transplant. Ultimately she was able to go home without the need for a new liver. “She was stable for the next three years,” Barba says. “Meanwhile, my issues started resurfacing.”
Barba knew that eventually she would need a second liver transplant. “The doctors said if I took care of myself, the new liver would probably last 10-15 years,” she says. Sure enough, 15 years after her first one, a routine biopsy determined that her liver was close to failing. In the face of a longer waiting list in California, the family spent the latter part of 2016 in Kansas City, returning in January 2017 following Barba’s second liver transplant.
As Barba recuperated, there was reason to believe Giuliana’s health problems were behind her as well. Her liver function tests were meeting their targets, and by August, she was taken off the transplant waiting list. A month later, when Giuliana appeared to be jaundiced, Barba questioned whether she and her husband were overreacting. “There had been times when we would kind of freak ourselves out, asking each other whether her eyes or skin looked yellow,” Barba says. “This time we were at a family gathering, so we asked our family members, and they noticed it too. We took her in, and sure enough, her liver enzymes were super high.”
Giuliana was admitted to UCLA Mattel Children’s Hospital in September, and her condition rapidly deteriorated to the point that she was experiencing hallucinations, just as Barba had, from a complication of end-stage liver disease known as hepatic encephalopathy. As it became apparent a transplant would be required, Barba relied on her husband to tell her what she had gone through so she could better understand her daughter’s experience. “I had lived through it but I didn’t remember it,” she says.
With fall progressing toward winter, the wait seemed interminable. Even if Barba had been through it herself, watching Giuliana struggle was far worse. “After talking to the nurses we decided to explain to Giuliana that she needed a replacement part — just like Mom had gotten — before she could go home,” Barba recalls. “She understood, but it was hard for all of us to have to wait so long for it to happen.”
Giuliana got her replacement part in December 2017, three months after she was admitted; she wouldn’t be discharged until March, at the end of a six-month hospital stay. By that time she had fully endeared herself to the hospital staff. As a child life specialist in the liver transplant program, Megan Pike’s role is to help children cope with their hospitalization and illness, typically by building a rapport through age-appropriate activities. “Giuliana came across as quiet and serious, but as I got to know her and gained her trust, I found she could be really playful,” Pike says. “It was also obvious that this was a very close family. Whenever Giuliana was offered a toy, she would ask if she could have one for her brother and sister.”
Giuliana also liked to paint people’s nails, and through word-of-mouth she developed an impressive clientele. On the day of her discharge, the staff allowed her to take over an empty playroom and post a sign that read “Giuliana’s Nail Salon.” A clipboard was circulated that allowed anyone to sign up for a time; walk-ins were permitted for those who couldn’t commit. “It was a way for Giuliana to connect with people,” Pike says. “You didn’t get to choose your own color, though. She picked for you.”
A little more than a year later, both mother and daughter are healthy. Now 6, Giuliana does occasionally grow frustrated with all of the medications she has to take each day — about a dozen of them, some of which require multiple pills, not to mention that they need to be cut in half so that Giuliana can swallow them. On days when her daughter needs extra motivation, Barba gets out her own medications and bonds with Giuliana over their “pill party.” One pill at a time, they take turns, though Barba, further removed from her transplant, doesn’t have as many, to her daughter’s chagrin. “I tell her, you’ll get there,” Barba says.
Maybe they’ll hold a pill party on Mother’s Day, Barba says. Maybe they won’t. What matters is that they’ll be home.
Read more stories from UCLA Health's Transplant program.