Bucky’s Story: Meet the Youngest Baby to Have an Intricate Liver Surgery at Packard Children’s

When Anna Greunke had her third child, Bucky, she knew within two weeks that something wasn’t quite right. At first, the baby was happy and active. “Then I had a weird feeling,” she says. “He was losing weight even though he was eating great, just like my other kids did. It didn’t make sense.” When Bucky continued to lose weight over the next few days, Anna brought him to his pediatrician, who admitted Bucky to their local hospital.

After blood work and an ultrasound, the care team told her they’d need to transfer Bucky to a bigger Bay Area hospital. “They didn’t say why, just that his bilirubin levels were elevated,” says Anna. “They said it was probably nothing, but I started crying. I knew something was really off.”

Anna’s intuition was right. When they arrived, a doctor told her that he suspected that Bucky had a rare, life-threatening liver condition called biliary atresia. Babies born with biliary atresia have no connection between the liver and the small bowel, which causes bile to back up and destroy the liver. It’s a rare disease—occurring in about one in 12,000 U.S. births—and can be hard to diagnose. Many babies can have abnormal bilirubin in the first two weeks of life, so it’s difficult to recognize which babies need to be evaluated for biliary atresia.

Bucky’s doctor explained the condition to Anna and laid out a plan that involved taking a biopsy of Bucky’s liver and waiting two weeks to get the results. Then they would consider doing the specialized surgery for biliary atresia, called a Kasai procedure, to route the bile out of the liver.  

Over the next few days, Anna could see that Bucky wasn’t doing well. “He stopped eating and wasn’t waking up as well as he should,” she says. Anna listened to her intuition again. “I felt like I wasn’t getting enough answers,” she says. As luck would have it, her friend worked as a nurse on Lucile Packard Children’s Hospital Stanford’s pediatric liver transplant unit, and Anna reached out to get her advice. “She told me that I really shouldn’t wait two weeks.”

A critical window

Anna transferred Bucky to Packard Children’s right away. When they arrived at midnight, a surgeon met them and discussed the next steps in making the diagnosis of biliary atresia. “The timing of the procedure is critical,” says pediatric hepatologist Leina Alrabadi, MD, Division of Pediatric Gastroenterology, Hepatology and Nutrition, who has followed Bucky closely. If the Kasai is performed within the first 45 days of a baby’s life, the surgery has a much better chance of restoring bile flow and lessening the damage to the liver, according to Alrabadi. The success rate quickly drops from there—practically by the day. If it’s performed within the first 60 days of life, 70% of children will have restored bile flow; after 90 days of life, it’s less than 25%.

“Our doctors understand the extreme importance of pushing things along quickly when there is concern for a baby to have biliary atresia,” says Dr. Alrabadi. When Bucky arrived, a multidisciplinary team of specialists in pediatric hepatology, surgery, interventional radiology, and nursing sprang into action. He had the procedure when he was 33 days old, becoming the youngest patient to have the Kasai procedure at Packard Children’s.

In addition to a baby’s age, the success of the Kasai procedure is determined by the expertise of the surgeon and a standardized postoperative medication management. Matias Bruzoni, MD, a pediatric surgeon at Packard Children’s, performed the delicate reconnection on Bucky. He’s performed about 35 Kasai procedures in his 11 years at Packard Children’s, making him one of the most experienced surgeons performing this specialized procedure.

A promising tomorrow, a fun-filled today

The Kasai procedure is not a cure for biliary atresia, and the majority of children will ultimately need a liver transplant in their lifetime. Still, a successful surgery allows a child to keep his or her native liver longer and potentially avoid a future transplant altogether.

Fortunately, Bucky’s surgery was a success. He’s now a year old, and recent blood tests show that his liver is working perfectly. While he won’t need to return to Packard Children’s for six months, the team will be in close touch with Anna and local doctors to ensure that Bucky’s blood work remains normal and that his development and growth are on track. “We’re all extremely grateful the Kasai is working and Bucky is doing very well, so our role is recognizing any signs of liver disease early to prevent complications,” says Dr. Alrabadi.

Anna, her husband, and their two other children are making the most of their summer together and are appreciating every milestone that Bucky meets. “He can say ‘Mama,’ ‘Dada,’ ‘Up, up, up’—and he loves to eat!” says Anna. “We’re going on family adventures like camping, hiking, fishing. Just embracing life and experiencing everything we can, since Bucky’s healthy now.”