On the day of Lily’s one-month checkup, instead of celebrating a happy milestone, her parents found themselves making a 2 a.m. visit to a hospital emergency room near their San Jose home. Something was clearly wrong with their baby, who had been vomiting all evening and had become dehydrated.
“We were pretty terrified going to the ER the first time,” said Lily’s mother, Erica. “Our baby was sick, but we didn’t know why yet, and we were also scared about possibly being exposed to COVID at the hospital. Once we had a diagnosis, we were surprised and worried.”
An ultrasound showed an unusual phenomenon in a newborn: Lily had gallstones. The doctors took a cautious approach, discharging the infant after four days and advising her parents to “watch and wait.” The family consulted with Adel Abi-Hanna, MD, a pediatric gastroenterologist with Stanford Medicine Children’s Health in Los Gatos, who agreed that they should continue to wait it out.
But within a few months, there were other worrisome signs. Lily’s poop had turned white, suggesting that she wasn’t getting any bile from her liver, and bile is essential for digesting food. This time, Lily’s parents immediately called the on-call surgeon, who suggested they take her directly to Lucile Packard Children’s Hospital Stanford.
The Packard Children’s doctors found that one of the gallstones had become lodged in the common bile duct and was blocking the way. In addition to removing the obstruction, they would have to take out the problematic gallbladder as well. In clearing the tiny bile duct, the clinicians faced a monumental task. While they commonly perform the procedure in adults and even in children as young as 4 or 5, it is very rarely done in infants.
“In a very small child, it’s technically a very challenging procedure, as the bile duct is only 1 millimeter wide,” about the width of a thin spaghetti strand, said Lily’s doctor, Roberto Gugig, MD, a pediatric gastroenterologist and director of the endoscopy unit at Packard Children’s Hospital. As it happens, Dr. Gugig is one of the few specialists in this country with the skill and experience to perform the delicate procedure.
He would have to operate inside this minute channel using instruments not designed for little bodies. Moreover, to avoid open surgery, he would operate through an endoscope—a slender, flexible tube with a video camera and light at the end. The scope is inserted into the mouth to gain access to the internal organs.
“We knew Dr. Gugig was one of a handful of doctors in the U.S. who does this in babies,” said Lily’s father, William. “He was very reassuring. When we handed her over on the day of the surgery, we knew she was in good hands.”
On June 19, Dr. Gugig did a noninvasive procedure known as endoscopic retrograde cholangiopancreatography (ERCP). During the procedure, he threaded the scope down the 3-month-old baby’s esophagus, though the stomach, and into the small intestine. From there he was able to locate the bile duct. He guided a thin wire and catheter into the duct, and using fluoroscopy, he injected some dye into the area so that he could see the blocked section light up on an X-ray and monitor the process of dislodging the stone. Lily remained under general anesthesia during the procedure.
It was all done in a dedicated operating room space at Packard Children’s with specialized technology for these types of advanced endoscopic procedures. Dr. Gugig also had the support of a specialized team of pediatric anesthesiologists, as well as nurses trained for these unusual procedures.
After he opened up the duct, Packard Children’s surgeons stepped in to remove the gallbladder, making a few tiny incisions in the baby’s abdomen to insert a laparoscope—a slender surgical tool with a camera at the end. Because both operations were done at the same time, Lily had to undergo anesthesia only once. The two procedures took about five hours—all without having to do a more invasive surgery, said Dr. Gugig, who is a professor of pediatrics at the Stanford University School of Medicine.
“She did very well. She recovered quickly,” he said. “We started feeding her soon afterward.”
The advantage of ERCP is that patients experience less pain, recover faster, and spend less time in the hospital, Dr. Gugig said. Moreover, open surgery on an infant’s bile duct would be extremely challenging for surgeons who would have to sew back together the minute tissues of the duct after the blockage was removed, he said.
He and his team perform about 150 ERCP procedures a year at Packard Children’s, about 10% of them in infants. He said the most common complication is irritation of the pancreas, which can occur in 5% to 10% of cases.
Lily suffered no ill effects and left the hospital after five days. “By the time she was discharged, her spirits were back to normal. She was happy-go-lucky,” her mother said. Doctors had left behind a stent to drain any fluid from the area, removing it a month later without fanfare.
“You look at her now, and you wouldn’t know she had been through a hospital stay and a surgery as unique as pediatric ERCP,” her father said. “There are a few tiny marks on her stomach, but otherwise you wouldn’t even know what she had been through. We are very grateful for that.”
Lily had fallen behind on weight before the surgery, but within a month she was back on track, her parents said. She has progressed to eating solid food—baby oatmeal, avocado, and sweet potatoes. She no longer takes medication other than baby vitamins.
“The whole experience was amazing,” her mother said. “We are so deeply thankful for the care we received from all the nursing staff and the medical team. Dr. Gugig was phenomenal, and we really appreciated how he and the surgery team worked together. They were really concerned about how we would get the best outcome for our daughter. … We were lucky we were in the Bay Area, within half an hour of Packard.”
Learn more: https://www.stanfordchildrens.org/en/service/advanced-endoscopy