At Lurie Children’s, surgeon offers a cure for baby with rare liver disorder

At Lurie Children’s, surgeon offers a cure for baby with rare liver disorder

Danielle and Mike expected the trip in late 2018 to see a pediatrician with their son Griffin to be routine. The 12-month-old had spiked a fever and probably had an ear infection, they remember thinking. They would get some antibiotics and head back to their Colorado home.

The parents were shattered when, following a blood test, the physician told them to immediately pack a bag and drive an hour away to the nearest children’s hospital for more testing. The pediatrician suspected leukemia.

“We were just at a loss,” Danielle said. “We didn’t know how to digest it.”

After what Danielle called a “nine-day rollercoaster” of bloodwork, biopsies and other tests, the diagnosis that came was both a relief and shock, she said. Griffin didn’t have cancer, but he did have a rare condition known as portal vein thrombosis, in which a clot forms and blocks the main vein going into the liver. This disorder can cause high blood pressure in veins around the lungs, difficulty breathing and life-threatening bleeding.

Finding hope in Chicago

Griffin with Dr. Superina

The hospital told them Griffin’s best hope was to have surgery at Ann & Robert H. Lurie Children’s Hospital in Chicago. There they would find Dr. Riccardo Superina, an internationally renowned expert on the surgery known as the meso-rex bypass shunt, to correct Griffin’s condition. The procedure restores the normal blood flow to the liver and can offer a complete cure to portal vein thrombosis.

“Choosing Lurie Children’s was a no-brainer,” Danielle said. “We were going to get him the best health care we possibly could.”

After six troubling weeks wrangling with insurance and several hospital stays to manage Griffin’s symptoms, the family took the 1,000 mile flight to Chicago in December 2018 for the surgery.

While the procedure took “the longest seven-and-half hours of our lives,” as Mike recalls, the couple felt relieved knowing Griffin was getting the best care possible. Following the surgery, Griffin spent two days recovering in intensive care at Lurie Children’s and stayed with his family for the next couple of weeks in Chicago for frequent check-ups.

Time to heal

The staff at Lurie Children’s helped make the hospital feel like “home away from home,” Danielle said.

“We’re in awe by everyone at Lurie Children’s. Everyone there was so helpful and kind,” she said, recalling Griffin’s delight interacting with comfort dogs and spending time in the hospital’s developmental playroom for infants and toddlers.

By Dec. 22, the family was able to return home with a healing but otherwise healthy baby, just in time for Christmas.

“It was a small celebration, not over-the-top like we usually do, but it was really special and one I’ll remember forever,” Danielle said.

Today, Griffin is a lively 18-month old who loves snuggling his stuffed animals and chasing his older brother, Mikey, around the house. He returns to Lurie Children’s just a few times a year for follow-ups with Dr. Superina.

“All his bloodwork is coming back great,” said Mike. “We don’t expect any surprises; he’s healthy and happy and we couldn’t be more grateful.”

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