Evie Morgan, two years old
SSM Health Cardinal Glennon Children’s Hospital
Evie was diagnosed with a 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. Further evaluation found she had also developed Hydrocephalus (fluid on the brain), as a side effect of spina bifida. Her family was referred to the 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 her pregnancy.
Evie was born three weeks premature and was immediately transferred to Cardinal Glennon where she underwent surgery to close her open spine. After a 10-day stay in the Neonatal Intensive Care Unit, Evie finally 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 (laying on her belly) and required an apnea monitor around her chest.
When Evie was five weeks old, her neurosurgeon became worried about the growth of her head. After an ultrasound, it was determined Evie would require a shunt to help drain the excess fluid building up around her brain. Evie underwent brain surgery to have the shunt placed and has not required any further intervention regarding her Hydrocephalus.
After Evie’s shunt surgery, she was healthy and progressing well in physical therapy. A few months later, she began coughing while drinking and it was discovered that she had Laryngomalacia (a condition in which the soft, immature cartilage of the upper larynx collapses inward during inhalation, causing airway obstruction). This caused her to regress in her physical therapy. She was in the Emergency Room approximately every three weeks almost like clockwork. Each time she was diagnosed with pneumonia. After receiving the all-clear from ENT and Pulmonary, her neurosurgeon felt confident the issues were being caused by Arnold Chiari Malformation Type II (a structural defect in the cerebellum that controls balance). Evie underwent yet another brain surgery to repair the defect.
Since surgery, Evie has been healthy! The Laryngomalacia corrected itself and she has increased her physical endurance. Now at two years old, her personality has begun to shine! She has even learned to walk with the assistance of a walker.
Evie’s family describes her as a silly, vibrant and overly determined little girl. She has an over-the-top personality which has lovingly earned her the nickname “diva princess”. Her doctors are hopeful she may one day be able to walk unassisted!