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”. Evie also happens to have Spina Bifida (Myelomeningocele). Evie was born on May 7, 2013 at SSM St. Mary’s Hospital in St. Louis Missouri. At 30 minutes old, she was transferred to SSM Cardinal Glennon Children’s Medical Center. At 14 hours old, Evie underwent surgery to close her open spine. After the neurosurgeon closed her spine, he determined he would be unable to close the skin because the defect on Evie’s back involved some dead skin around the lesion. So, a plastic surgeon was called in. The plastic surgeon created a skin flap and was able to successfully close her back. After a 10 day Neonatal Intensive Care Unit (NICU) stay, we were released home. Evie’s back was still extremely fragile from surgery so she was required to come home in the prone position (laying on her belly) which meant she also required an apnea monitor around her chest.
When Evie was 5 weeks old, her neurosurgeon became worried about Evie’s head growth. After a head ultrasound, it was determined Evie would require a shunt to help drain the excess fluid building up around her brain (Hydrocephalus). Evie successfully 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. It was a few months later when she began coughing while drinking, developed Laryngomalacia and started regressing in physical therapy. We were in the ER about every 3 weeks, almost like clockwork. Each time would be for pneumonia. After consulting with ENT and Pulmonary and getting the all-clear, her neurosurgeon felt confident the issues were being caused by Evie’s Chiari Malformation Type II.
Most children with Spina Bifida have Chiari Type II but are not symptomatic, therefore not needing intervention. Since Evie was extremely symptomatic, her neurosurgeon felt confident this is what she needed. On May 19, 2014, Evie underwent a Suboccipital Craniectomy and Cervical Laminectomy of C1-C3. Evie recovered nicely from surgery and was released within 3 days.
Since surgery Evie has been healthy!!!! She was completely off oxygen within 2 weeks, has improved swallowing, her Laryngomalacia resolved itself, she has increased endurance in therapy and her personality began to shine! She “talks” all the time now, learning new words every day. She has learned to crawl and is beginning to attempt steps. To say her surgery was a success is a complete understatement. It changed her life!