Children’s Hospital New Orleans and Our Lady of the Lake Children’s Hospital Partnership Leads to Life-Altering Gastro Surgery

Demani's story of healing and hope. 

In life, we get by with a little help from our friends... In this case, the partnership between Children’s Hospital New Orleans and Our Lady of the Lake Children’s Hospital in Baton Rouge has provided little Demani Hicks with hope for a pain-free, happy childhood.

Demani was born on Nov. 12, 2019, 12 minutes after his fraternal twin, Demari. Mom, Cierra Johnson, 37, says her two beautiful babies completed her family. (Cierra and then-husband Demarkco Hicks already had a 12-year-old son.)

Everything was going according to schedule…

Carrying twins didn’t present any particular challenge for Cierra. Other than three weeks of bedrest toward the end of her pregnancy, everything was going as planned. The twins were due on Dec. 4, 2019 and made an early entrance into the world – but physicians said that wasn’t unusual for multiples. In any case, Cierra and Demarkco went home as scheduled with their babies in tow.

From the start, it was easy for Cierra to see – and hear – that something wasn’t right with Demani. He suffered with intense constipation, and seemed to be in pain all the time, she said, recalling long bouts of severe crying.

“They were sleeping on the same schedule and meeting milestones, but Demani seemed to be in a lot of pain,” Cierra explained.

When he was almost 3, in October 2022, Demani began to experience particularly difficult abdominal pain. Cierra brought him to Our Lady of the Lake Children’s Hospital in Baton Rouge, near her home. “I remember he was crying and balled up in a knot,” she said, noting that he was checked and admitted for testing and observation.

At the time, it was thought to be constipation, but about six months later, Demani had another particularly bad episode, Cierra explained. “We couldn’t manage it at home anymore. Demani had a fever, was having cold sweats and was screaming in pain. It was the worst it had been, and I knew we needed answers,” Cierra said. “We went to the emergency room at Our Lady of the Lake to seek help and answers.”

Demani was diagnosed with pancreatitis after a 5-day stay at Our Lady of the Lake Children’s Hospital, but it had been challenging for doctors to identify a cause for the “painful episode.”

To help determine the problem, Our Lady of the Lake Children’s Hospital Pediatric Gastroenterologist Dr. Aimee Caillet consulted with a pediatric pancreatitis expert, Dr. Russ Zwiener, gastroenterologist at Children’s Hospital New Orleans.

“I was brought in to consult on the case in the Spring of 2023. At the time, Demani was having a particularly bad episode,” Dr. Zwiener said. “We were determined to find the cause.”

Fast forward a few months…

Dr. Zwiener, Director of Endoscopy at Children’s Hospital New Orleans, reviewed past imaging and reports as well as procedures and treatments Demani had undergone. He said it was time to find out exactly what was going on – and why.

“I recommended an MRI which helped to delineate his anatomy and found the cause of Demani’s pancreatitis,” Dr. Zwiener said.

The new imaging showed that Demani had anatomical abnormalities of both his bile duct and pancreatic duct (anomalous pancreaticobiliary junction or ABPJ), as well as a dilated bile duct which, Dr. Zwiener said, was due to a choledochal cyst in the child’s bile duct.

“After the MRI, we were full steam ahead,” Cierra said. “And Demani is feeling so much better.”

That’s when things moved into high gear. The decision to perform a special procedure was made. “I met with one of our pediatric surgeons here in New Orleans, Dr. Jessica Zagory, and asked her to work with me so we could have a multidisciplinary approach to this difficult case,” Dr. Zwiener explained. “We made the decision to perform an endoscopic retrograde cholangiopancreatography (ERCP) to allow for better drainage of his bile and pancreatic ducts.” Dr. Zwiener was also able to obtain detailed images of the bile duct using the technique of endoscopic ultrasound.

Dr. Zwiener is one of 15 pediatric gastroenterology specialists in the country who can perform both of the specialized pediatric procedures, “EUS and ERCP.”

Nearing the finish line…

The ERCP was completed in mid-December 2023 and Demani is doing great,” Dr. Zwiener confirmed.

The few months in between procedures allowed time for Demani’s bile duct to return to normal shape. A follow up ERCP procedure was performed on Feb. 5 to confirm Demani is on the final road to recovery. This procedure also confirmed that the congenital cyst was still intact and needed to be removed. Dr. Zagory removed the cyst in early April. Demani did great and was discharged from the hospital 5 days later.

For now, Cierra is loving watching her twin boys grow. “Demani loves dinosaurs. “Dinosaurs, dinosaurs, dinosaurs! He is always talking about them. He must have 100 little plastic dinosaurs and he knows all their names,” mom said.

It’s taken a long time to get to where she isn’t worried about Demani having another painful episode. Cierra said, “Dr. Zwiener and Dr. Zagory have shown me there is a light at the end of the tunnel. They have been kind, loving and personable.”

“I think it would be easy for doctors to focus just on the child, but they never made me feel like ‘just the mom.’ I was made to feel like my questions mattered,” Cierra said.

Before, during and after the procedures, mom says Demani’s entire care team, especially the doctors, were very attentive to her family. “They checked in with me and always reminded me how much they cared,” Cierra said.

“They are very thorough in their work, and I know my baby is in very good hands. I’m so happy that Our Lady of the Lake Children’s Hospital and Children’s Hospital New Orleans are partnered together for the best care of their patients. The collaboration made a huge difference for my family.”

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Aimee Caillet, MD, a Fellowship-trained pediatric gastroenterologist at Our Lady of the Lake Children’s Health, received her medical degree from Louisiana State University Health Sciences Center in Shreveport, Louisiana She completed her pediatric residency at University of Mississippi Medical Center in Jackson, MS and her Fellowship in pediatric gastroenterology at Vanderbilt University in Nashville, Tennessee. She is certified by the American Board of Pediatrics and is a member of several industry societies including the American Academy of Pediatrics, American Gastroenterological Association and North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition.

Russell Zwiener, MD is a Gastroenterology, Hepatology, and Nutrition specialist at Children's Hospital New Orleans. Dr. Zwiener serves as the hospital's Director of Endoscopy and Director of Pediatric Advanced and Therapeutic Endoscopy. After earning his medical degree from St. Matthews University, Dr. Zwiener completed a one-year general surgery internship at the University of Texas Health Science Center in San Antonio. He then completed his general pediatrics residency at Oklahoma University Health Science Center and then a pediatric gastroenterology fellowship at LSU Health New Orleans right here at Children's Hospital. He trained further for an additional year in San Antonio to complete a pediatric advanced and therapeutic endoscopy fellowship at Baylor College of Medicine. Dr. Zwiener is board-certified in both General Pediatrics and Pediatric Gastroenterology. Although Dr. Zwiener treats all pediatric gastrointestinal conditions, he specializes in caring for children with pancreaticobiliary disorders including acute and chronic pancreatitis, gallbladder and bile duct disorders. Dr. Zwiener performs highly specialized procedures including endoscopic retrograde cholangiopancreatography (ERCP) and Endoscopic Ultrasound (EUS). He is one of the very few pediatric trained physicians performing these procedures on children in the country.