Collaborative and Novel Care Restores Hope for Sofia

By Pamela, a Children’s National parent

In many ways, my 11-year-old daughter Sofia is like other kids her age. She loves music, art and hanging out with friends. But a complex condition has created obstacles in her daily life. Sofia has been in and out of the hospital since she was a baby.

When she was 5, she was diagnosed with a motility disorder. This occurs when the muscles and nerves that move food through the digestive system don’t work properly. It causes a host of uncomfortable symptoms. We also learned later that her colon was non-functional, which is very rare.

Dr. Marc Levitt, chief of the Division of Colorectal & Pelvic Reconstruction at Children’s National, performed an innovative procedure when Sofia was 9. He removed all but the very end of her colon and connected it to the small intestine. This significantly improved her quality of life. Sofia still gets most of her nutrition through a surgically implanted feeding tube since she has trouble absorbing nutrients.

Her long hospital stays would have been much harder without her child life specialist, and the wonderful art and pet therapy programs. Sofia also brings her love of music to Seacrest Studios, where she is known as “DJ Wolfie”. These activities offered normalcy during stressful times.

We still visit the hospital for gastrointestinal flares and infections. Dr. Anil Darbari, a gastroenterologist and director of the Comprehensive Motility Program, has cared for Sofia since she was little. I’ve been so impressed with the communication between the teams. Drs. Darbari and Levitt, along with the urology team, collaborate to provide the very best care for my daughter.

Our journey is ongoing, but I’m in awe of Sofia’s strength. She smiles even on her hardest days. One day she wants to be a nurse or doctor so she can help other kids going through similar challenges. We feel blessed to have such talented and compassionate clinicians and staff by our side.