Bennett's Brave Journey

Bennett Mudiyappan has endured more medical challenges than many people do in a lifetime. His journey began just a few days after he was born, when he underwent surgery to repair an obstruction in his small intestine. After he failed to gain weight, additional tests revealed Bennett also had biliary atresia, which occurs when the bile ducts in the liver are obstructed.
 
The disease causes liver damage and can be fatal if left untreated. Bennett and his family are fortunate that some of the nation’s leading experts in treating his conditions were located right in their own “backyard” at Children’s in Chicago.
Under the direction of Barry K. Wershil, MD, the Division of Gastroenterology, Hepatology and Nutrition (GI) is ranked 8th in the nation by U.S. News & World Report. Each year its specialists care for hundreds of children with a wide range of common and complex gastrointestinal and liver disorders, which also affect a child’s nutrition. These conditions include inflammatory bowel disease (Crohn’s disease and ulcerative colitis), celiac disease and eosinophilic esophagitis, among others. The staff also provides care for children who need liver and intestinal transplants.
The best place for Bennett’s care
Bennett first underwent a surgical procedure called a Kasai portoenterostomy at another area hospital, which was unsuccessful in correcting the intestinal obstruction. Bennett’s parents, Santhi and Amburos, were told that their child’s best hope was a liver transplant, and the best place for his care was Children’s. At four months of age, Bennett weighed just 5 pounds.
 
Bennett’s parents met with Riccardo A. Superina, MD, head of Transplant Surgery, co-director of the Siragusa Transplantation Center, and surgical director for the Kidney and Liver Transplant programs at Children’s. In an attempt to delay the need for a liver transplant until Bennett was older, Dr. Superina performed a second Kasai surgery. However, Bennett’s liver continued to fail and he was put on the transplant list for a donor organ.
 
During this time, Bennett was also under the care of Valeria C. Cohran, MD, medical director of the Intestinal Rehabilitation and Transplantation program. The program is one of fewer than 30 such centers in the U.S., specializing in helping children like Bennett grow and, hopefully, avoid the need for an intestinal transplant.
 
Slowly Bennett gained weight, and after 15 months on the transplant list a new liver became available. He was almost two years old. “When we got the call that they had a liver for him, we felt both relief and fear,” says his mother, Santhi. “I couldn’t sleep at all the night before the surgery.”
 
In terms of numbers of liver transplants performed, Children’s is ranked among the top 10 pediatric liver transplant centers in the U.S. with nearly 300 performed to date. The program cares for more children needing liver transplants than any other hospital in the state of Illinois.
 
After a 12-hour surgery performed by Dr. Superina, who holds the Robert E. Schneider Chair in Transplantation, Bennett’s family received the news they were hoping for: the procedure was a success. Bennett’s liver transplantation team also included program co-director Estella M. Alonso, MD; Udeme D. Ekong, MD; and nurses Amy Bouvy, APN; Ilana L. Cymerman, CPNP; Joan Lokar, APN, NP; and Jessica Zimont, NP.
 
Bennett initially needed to be fed through a gastronomy tube (g-tube) so he could receive the nutrition he needed to grow. As time went by, he developed an aversion to eating by mouth.
 
He was regularly seen by speech therapists and specialists in Children’s feeding therapy clinic at Central DuPage Hospital led by Mark K. Fishbein, MD, who employed a “food chaining” approach to help Bennett. With virtually no experience with chewing, Dr. Fishbein started Bennett on pediatric formula and gradually introduced applesauce, pureed goods and small pieces of fruit. After a year and half of therapy, he was able to eat most solid foods and no longer uses a g-tube today.
 
Bennett also has multiple food allergies and returns often to Children’s for various follow-up appointments. He is one of the many children who will benefit from Children’s new state-ofthe- art facility, Ann & Robert H. Lurie Children’s Hospital of Chicago, and its downtown Chicago location.
The promise of Lurie Children’s
Dr. Wershil, who was recruited from Children’s Hospital at Montefiore in New York, says his decision to come to Chicago was influenced largely by the promise of Lurie Children’s and the advances in GI care and research it will make possible. The new hospital will open in June 2012 on the Northwestern University Feinberg School of Medicine campus in downtown Chicago.
 
Dr. Wershil says the new facility and location will offer numerous benefits for children with digestive and liver disorders. These include access to advanced medical techniques, consultations with colleagues at the adult GI division at Northwestern Memorial Hospital and increased opportunities for collaborations with basic science researchers at the Feinberg School. “Competition is keen among top pediatric medical centers to recruit the most talented young pediatric GI specialists,” he says. “Lurie Children’s will play a major role in attracting the best and brightest.” Additionally, Lurie Children’s will provide benefits for teens who are transitioning from pediatric care to adult care at Northwestern Memorial Hospital. “Being downtown will offer us the chance to build transitional care programs for our patients,” Dr. Wershil says. “It will allow us to collaborate with our adult counterparts and create a plan for each patient’s transition of care.”
 
Dr. Wershil is proud of the division’s subspecialty programs, which provide comprehensive care for children like Bennett with complex and multiple conditions. These programs include clinics for children with inflammatory bowel diseases, eosinophilic esophagitis, gastrointestinal motility and functional bowel disorders and fatty liver disease.
A happy little boy
Today, despite his challenges, Bennett is an energetic 7-year-old boy who loves Spiderman, building with LEGO®s and drawing characters from Star Wars. He is a huge fan of pro basketball players Derrick Rose and LeBron James and, according to his mom, has a great sense of humor.
 
“Whenever I feel down because of some of the challenges Bennett is going through, he cheers me up,” says Santhi. “In many ways, Bennett is my role model.” Bennett continues to grow on pace and sees Dr. Cohran and Dr. Fishbein for regular follow-ups, along with speech language pathologist Sarah Flock at the feeding clinic.
 
“So many wonderful people at Children’s have helped Bennett along the way; in fact, they have become like family to us,” says Santhi. “Bennett is doing so well now, and our greatest hope is that he continues to be a happy little boy.”
The division’s activities are supported by the Buckeye Foundation, Grant Healthcare Foundation, and Denise and Dave Bunning, among others.​