Sawyer was delivered via C-section a month before his due date in Sioux Falls, South Dakota. A routine ultrasound at 26 weeks of gestation had shown fluid in his abdomen, but no other abnormalities that required further testing were found. The buildup of fluid continued throughout the remaining pregnancy, however. Sawyer was born with so much fluid in his abdominal cavity that he was transported to the NICU immediately after birth.

The NICU team determined the fluid in Sawyer’s abdomen was lymphatic fluid. This buildup of lymphatic fluid in the abdomen is called chylous ascites, which can make it difficult to tolerate feeds and to breathe. Even on a ventilator, Sawyer struggled to get enough oxygen, and the NICU team turned to an oscillator, a special kind of high-frequency ventilation that delivers rapid pulses of air, keeping tiny lungs open and protected. 

“The first 48 hours of Sawyer’s life were very scary,” says his mom, Juliana.

It took 10 days to stabilize Sawyer enough that he could be placed back on the regular ventilator, and Juliana and Riley, Sawyer’s dad, were finally able to hold their baby for the first time. “After days of sitting at his bedside, finally holding him was unforgettable,” Juliana remembers.

But the lymphatic fluid continued to accumulate, and Sawyer soon needed a peritoneal drain: a thin catheter tube inserted into the abdominal cavity to drain the fluid. At first, it seemed that the combination of the drain and treatment was working. But within weeks, Sawyer’s breathing became labored again. The drain had clogged, and the fluid was building back up.

“That’s when we began to think about getting a second opinion,” says Juliana.

Finding lymphatic expertise at CHOP

Juliana, a nurse, began to research hospitals across the country in search of lymphatic expertise. “I was looking for hope,” she says.

She and Sawyer’s care team soon found the Jill and Mark Fishman Center for Lymphatic Disorders at Children’s Hospital of Philadelphia (CHOP). The first of its kind, CHOP’s Center for Lymphatic Disorders is an international leader in the diagnosis and treatment of lymphatic leak and flow disorders, with experts who have developed advanced imaging technologies to map out the anatomy and flow of the lymphatic system, enabling accurate diagnosis and minimally invasive treatments.

Juliana requested that Sawyer’s Sioux Falls doctors consult with CHOP on continued medical management of Sawyer’s condition. But when his drain continued to clog, the decision was made to transfer Sawyer’s care to Philadelphia. 

At 2 months old, Sawyer underwent an 8-hour procedure, called a MR lymphangiogram and selective embolization, to identify and treat the source of the lymphatic fluid buildup. Christopher L. Smith, MD, PhD, an attending cardiologist and lymphatic interventionalist, performed the procedure. 

“Dr. Smith warned us that the drainage would likely increase over the next 12 hours before it stopped,” says Juliana. “When it finally stopped, I didn’t want to get my hopes up. I was sure the drain had just clogged.”

To ease Juliana’s fear, a NICU provider performed an ultrasound of Sawyer’s abdomen. “They said, ‘Look, Mom. No fluid,’” Juliana remembers. “It felt like we could finally exhale."

Sawyer was soon able to transition to the specific low-fat formula required for infants with lymphatic disorders. Everything appeared to be looking up for Sawyer and his family – until it all came crashing down.

Collaborative care, leading outcomes

Although Sawyer’s lymphatic symptoms had resolved, he suddenly began to refuse his bottle, and his care team consulted with CHOP’s Division of Gastroenterology, Hepatology and Nutrition (GI). He received an NG tube but still vomited everything he ate. Although the lymphatic team wanted Sawyer to be taking all his nutrition by mouth prior to discharge, they recognized how difficult it was for Juliana and Sawyer to be so far away from the rest of their family in South Dakota. They agreed to transfer Sawyer back to their Sioux Falls hospital and continue care remotely. 

Ultrasounds in South Dakota soon revealed the cause of Sawyer’s continued GI symptoms – a cancerous tumor called a neuroblastoma in his abdomen. CHOP worked with the team in Sioux Falls to ensure that Sawyer’s lymphatic system continued to function properly throughout his oncology care. Says Juliana, “The two teams working together made me feel like all the best options were being presented to us. I knew Sawyer was getting the best care.” 

Thankfully, Sawyer’s tumor was successfully removed, and none of his follow-up MRIs showed any signs of abnormal fluid. “It’s the best outcome we could have hoped for,” says Juliana.

The gift of hope

Now 3, Sawyer is thriving. He loves sports and playing with his two big brothers. Free of GI and lymphatic symptoms, he has been discharged by both teams, and is finally able to eat whatever he wants, including his favorite – chocolate ice cream!

“When Sawyer was first diagnosed, I was desperate for another parent to show me a thriving 3-year-old and tell me there was hope,” says Juliana. “That’s what I hope Sawyer’s story can give another family.”