Evie was diagnosed with Myelomeningocele, the most severe form of spina bifida (a defect in which the bones of the spine do not completely form, leaving exposed nerves and spinal cord) during a routine ultrasound during her mom’s pregnancy. Further evaluation found she had also developed hydrocephalus (fluid on the brain) and Arnold Chiari Malformation, both side effects of spina bifida. Her family was referred to St. Louis Fetal Care Institute at SSM Health Cardinal Glennon Children’s Hospital where a team of specialists took care of her mom, Heather, for the remainder of the pregnancy.
Evie was born 3 weeks early and was immediately transferred by ambulance to Cardinal Glennon where she underwent surgery to close her open spine at 14 hours old. After a 10 day NICU stay, Evie got to come home from the hospital but with her back still extremely fragile from the surgery she had to remain in the prone position (on her belly) for a total of 5 weeks with a monitor around her chest, unable to be held by her family.
At five weeks old Evie would have her first brain surgery to implant a shunt. The shunt drains the excess fluid build-up around her brain. At one year old Evie would undergo yet another brain surgery – a major surgery to alleviate the symptoms caused by her Arnold Chiari Malformation. Before the surgery Evie was on oxygen 24/7 and required all of her liquids to be thickened. The surgery was successful and all of her symptoms are gone!
The summer of 2016 was especially difficult for Evie. She underwent a total of 5 surgeries in 5 months – 3 of which were on her spine. This was all due to a tethered spinal cord which was limiting her progression in physical therapy among other issues going on in her body. After a summer spent on her belly (yet again) to let her back heal, she was able to get the surgeries she needed on both feet and her eyes.
Evie is now four and a half years old. She has undergone a total of 12 surgeries in her short life. She has gone from using a wheelchair as her primary form of mobility to a walker, to quad canes, to sticks, and now to just 1 stick! Evie’s parents and caregivers are hopeful she will walk unassisted one day. No matter what Evie is always a silly, vibrant and overly determined little girl. She has an over-the-top personality which has lovingly earned her the nickname “sassy diva princess”.