Flashing her ever-present bright smile, 4-year-old Addison Zellner seems like any other happy, energetic pre-schooler. She loves playing on swings and slides and riding her tricycle. But for Addison, who underwent eight surgeries at Children’s in her first six months, life has been anything but ordinary.
Before she was born, Addison was diagnosed with spina bifida, a disease of the spinal cord that occurs in one out of every 1,000 births. The cause of the defect is not known, and there is no cure for it. Her spinal cord was in a sac protruding from her back, and she would need immediate surgery after she was born to repair the defect.
Living in Arizona at the time, and knowing they were facing a difficult birth for their first child, Addison’s parents, Jessica and Adam, decided to move back to their native Chicago, where their daughter could receive the best possible care. Before Jessica gave birth at Northwestern University Prentice Women’s Hospital, they met with neurosurgeon Robin Bowman, MD, who, along with David McLone, MD, PhD, directs Children’s Spina Bifida Center.
“We learned that some kids with spina bifida live in virtually a vegetative state, and others can run and play like any other child,” says Jessica. “The hardest thing is that there’s no way to predict just what a particular child will be able to do. But Dr. Bowman reassured us that her team would do everything possible to help Addison. She had a treatment plan already laid out, and we felt like we were in really good hands.”
Each child born with spina bifida requires care for a unique set of conditions, which is why Children’s Spina Bifida Center includes experts in Neurosurgery, Orthopaedic Surgery, and Urology. They collaborate with teams from Rehabilitative Services, Clinical Nutrition and Family Services to provide comprehensive care.
Addison was delivered a few weeks pre-term because tests had indicated that, in addition to the immediate surgery she would need to close her exposed spinal cord, she also needed treatment for hydrocephalus (fluid in her brain) and an enlarged bladder – conditions that are common in newborns with spina bifida.
Jessica only got to see her baby for 15 minutes before Addison was transported by ambulance to Children’s, where she would undergo her first surgery the next day. “It was really hard,” she says. “I could touch her hand, but I was unable to hold her. I just wanted to get out of the hospital and over to Children’s as fast as possible to be with her.”
Dr. Bowman surgically closed Addison’s back, and a few weeks later she underwent surgery to place a shunt in her head to remove fluid from her brain. Addison remained in the hospital’s Neonatal Intensive Care Unit (NICU) for nearly six weeks. She also developed a serious blood infection, and Jessica and Adam credit the NICU staff for saving her life. Addison underwent six additional surgeries as an inpatient, including one to detach part of her spinal cord from the surrounding tissues. When she was two and a half, Addison underwent a surgical procedure to release the tendons in her hips and ankles.
Today, Addison is blossoming. She receives physical therapy three times a week to strengthen her legs and torso, can walk with braces and is depending less on her wheelchair. Twice a year she has follow-up visits at the Spina Bifida Clinic with Dr. Bowman, orthopaedic surgeon Luciano Dias, MD, and urologist Elizabeth Yerkes, MD.
The family is also supporting the Children’s Marathon Team in the Bank of America Chicago Marathon on October 9. Both Jessica and her father-in-law are raising money and running as members of the team. “Addison is very excited about watching us in the Marathon,” says Jessica. “She has her dad text me while I’m running to say, ‘Go, mommy, go!
Jessica and Adam hope that Addison grows up sharing their passion for helping others. “It’s fun to watch her pretend to be Dr. Bowman one day and her dentist the next,” says Jessica. “We just want her to follow whatever her passion is into adulthood and to do something great with it.”
Story originally appeared in the October 2011 issue of Heroes Update.