BY ROCHELLE MELANDER | PHOTO BY DAVID SZYMANSKI
Ashley Gibson knew something was wrong with her newborn son, Dominic, from the moment the nurse put him in her arms. He was breathing fast, and his skin looked pale yellow. The medical staff at Centegra Hospital-McHenry in McHenry, Ill., attributed his distress to the meconium he’d aspirated during the birth process.
But later that night, Dominic wouldn’t nurse, and he continued to breathe rapidly. Ashley and her husband, Adam Gibson, asked the doctors to examine Dominic again. The neonatologist took Dominic for a scan, and they were gone most of the night. When the doctor came in early the next morning without Dominic, Ashley feared the worst. The neonatologist confirmed her worries: Dominic’s liver was enlarged, and there was a shadow under it.
“Does that mean he has cancer?” Ashley asked, thinking of her family’s long history with the disease.
“Not necessarily,” said the doctor.
The hospital’s medical team was not equipped to treat Dominic, so they transferred him to a hospital in Rockford, Ill. The physicians ran different tests, and the neonatologist wrote down three possible diagnoses, with the worst being a pediatric hepatoblastoma. “I instantly knew that was what it was,” Ashley says, “but I was trying to remain hopeful.”
Once again, the doctors told the Gibsons, who are from Trevor, Wis., that they could not treat this type of tumor and suggested that Dominic be transferred to Children’s Hospital of Wisconsin. “I was comforted that he was going to a place that would take good care of him,” Ashley recalls. “But I was also worried, because that’s when I knew it was a serious situation.”
At Children’s, Dominic was placed in the neonatal intensive care unit. The doctors did a biopsy, and 24 hours later the Gibsons had a definitive diagnosis: Dominic had liver cancer. His tumor was indeed a hepatoblastoma, which is the most common primary liver cancer for newborns and young children. Without any treatment, this cancer is quite aggressive and will spread throughout the body. The only treatment that’s curative is surgery to remove the tumor.
Dominic’s tumor was the size of a grapefruit and consumed almost 80 percent of his liver. At that size, it was too big to remove. Dominic’s oncologist, Dr. Meghen Browning, recommended chemotherapy to shrink the tumor. The tumor responded well to the treatment, and after just two rounds of chemotherapy, the tumor was small enough to operate. But Browning told the family that before scheduling surgery, she wanted to consult with a liver specialist, Dr. Johnny Hong (pictured) — and together they’d come up with a game plan.
Hong is a professor and chair of surgery at the Medical College of Wisconsin (MCW). Additionally, he serves as director of the Solid Organ Transplantation Center, a joint program of Children’s Hospital of Wisconsin, Froedtert Hospital and the Medical College of Wisconsin. He explains that the liver is a unique organ because it has the ability to regrow. With a normal liver, free of cirrhosis or any other liver disease, doctors can remove up to 70 percent of it, and the remaining 30 percent will regenerate. According to Hong, “Typically the factor that determines whether the liver is able to regrow or not is the health of the liver. Chemotherapy is quite effective in killing cancer cells, but it also kills normal cells.” For patients who have undergone chemotherapy or have a diseased liver, this means that they need 35 to 40 percent of the liver in order for it to regrow. So even though Dominic’s tumor had shrunk from occupying 80 percent of the liver to just 72 percent, Dominic needed more liver for the doctors to both remove the tumor and leave him with enough to survive.
The team decided they had two options for treating Dominic. The first option was to place Dominic on the liver transplant list. They could remove the entire liver with all of the cancer and replace it with a brand-new one. But Hong was wary of this. The transplant list is long, and the livers that usually become available would be too large for Dominic. Even a segment of a liver from a family member might be too large for the small infant. Because Dominic’s tumor was fast-growing, waiting for a liver when so few are available seemed too risky.
Hong offered a second option — he would try an innovative technique that had never been done on a patient this young. The technique requires two surgeries. During the first surgery, Hong and his team cut off the blood supply to the part of the liver that has the cancer. This stimulates growth in the remaining part of the liver without putting the patient at risk of having too little liver. Then it’s a waiting game. After a week, they check the liver through multiple image studies to see if the healthy part of the liver is big enough to survive on its own. If it is, they can go back in and take out the tumor, leaving enough healthy liver for the patient to survive.
“I was terrified because it hadn’t been done on a baby, but I trusted Dr. Hong because he was sure it could be done, and I went with what he thought was best,” remembers Ashley. Although the technique had never been attempted on a child this small, Hong was convinced the procedure would work. “I was confident that our success rate would be very high given our expertise in this area,” he says.
Seven days after the first surgery, Hong walked into Dominic’s room with a big smile and said, “His liver grew twice as much as we expected.” The healthy growth meant that the team was able to take out the tumor and get good margins. After the surgery, Hong assured the family that he got all of the cancer cells.
The Gibsons were grateful to Hong. “He reassured me that everything was going to be OK and (that) Dominic was in good hands, and he was,” says Ashley. Hong says that to work with well with parents, he has to put himself in their shoes. “In taking care of children, both you and the parents are making the decisions for an individual who is helpless to make their own decisions. The pressure, oftentimes, is very, very high,” he adds.
Dominic will turn 1 year old on Aug. 24 — and he is completely cancer-free. At this writing, he’s a healthy, 10-month-old baby who can crawl, pull himself up, and say many words, including mama, dada and nana. At his June visit to the pediatrician, he weighed 18 pounds, 9 ounces and measured 28 inches. In physical therapy, he’s hitting every developmental milestone on time — and some a bit early. Dominic is a thriving, happy baby.
The surgery has also been well-received by the medical community. Hong, Browning and their team wrote about the surgery for the Annals of Surgery, a monthly review of surgical science, which is a prestigious peer-reviewed scientific journal. Hong credits the environment at MCW for making it possible to try such an innovative procedure. “It’s our obligation to push the envelope and advocate for the patient,” Hong says. “Rather than waiting for someone else to innovate and then follow them, we are on the leading edge.”
“I’m hoping we’ll be able to save more children (with liver cancer) moving forward,” he adds.