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. We were referred to the St. Louis Fetal Care Institute at SSM Health Cardinal Glennon Children’s Hospital where a team of specialists took care of Evie and mom, Heather, for the remainder of the pregnancy.

Evie was born three weeks early and was immediately transferred to Cardinal Glennon Children’s Hospital where she underwent surgery to close her open spine. After 10-days of inpatient care 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 5-weeks-old, her neurosurgeon, Dr. Samer Elbabaa, 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 Dan Dierdorf Emergency and Trauma Center approximately every three weeks – almost like clockwork. Each time she was diagnosed with pneumonia. After receiving the all-clear from Ear Nose and Throat and Pulmonary, Dr. Elbabaa 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 2 years old, her personality has begun to shine! She has even learned to walk with the assistance of orthotics and a walker. Evie is a silly, vibrant and overly determined little girl. She has an over-the-top personality which has lovingly earned her the nickname “diva princess”. We are so incredibly thankful for the doctors, nurses, and staff at Cardinal Glennon Children’s Hospital for all they have done for our entire family. From teaching us how to first care for our very fragile newborn to holding our hands through sickness and surgeries, the people of Glennon have been there for us every step of the way. The intuitive nurses in the ER that were quick to diagnosis illness and know when to call in Evie’s main caregiver, Dr. Elbabaa, the incredibly sensitive and determined NICU nurses, our talented surgeons and nurses that call us back after hours or on the weekends and even the staff in the surgery waiting area, have all served such important roles in Evie’s life. Thank you will never be enough.

Sincerely,
Heather & Joe Morgan

Please join us and #TeamEvie #GBR16 in raising funds to support Cardinal Glennon’s lifesaving work! So many children and families benefit from this amazing hospital and we are excited to help make it even better! Every penny raised will go to the hospital and directly affect the children.