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 Health St. Mary’s Hospital in St. Louis, Missouri. At 30 minutes old, she was transferred to SSM Health Cardinal Glennon Children’s Hospital. 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 Arnold 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. Shortly after surgery Evie was completely off oxygen, her swallowing improved , her Laryngomalacia resolved itself, she hadincreased endurance in therapy and her personality began to shine! This surgery was a huge success.
Evie’s next major surgery was in July of 2016 for her tethered cord. Essentially Evie’s spina cord got attached and entwined with scar tissue at the base of her spine. While Evie was hitting a growth spurt and her body was trying to grow taller her spine was tethered at the base. This caused Evie to have a dramatic loss in function, caused issues with her feet, bladder and bowels, and caused her overall weakness and fatigue. The surgery was a success and just based off the smile of her neurosurgeon exiting the OR was enough for us to know we made the right decision in proceeding with this surgery. Recovery was difficult for Evie after this surgery. She required the intervention of a plastic surgeon, yet again. We have the best of the best with Dr. Lin. He performed miracles with her closure! After 2 additional surgeries performed by Dr. Lin, several external drains and nearly 10 weeks spent on her belly 24/7 (including sleeping, eating, and any transport she needed) she was released to regular activity. Since this series of surgeries Evie has proven nothing with stop her, progressing well with more and more independence with physical therapy.
Evie has had a total of 16 surgeries as of 2018. The most recent was a major bowel surgery in July of 2018. This surgery also became complicated and required an additional surgery to help her body begin healing. She is still recovering from all of this and her time missed from physical therapy. To put it in perspective, we have been told that for every day of missed activity for Evie that will take 3 days of hard work to regain what she lost. This last surgery landed her in the hospital for 9 days and then decreased activity after that. She is still working incredibly hard to regain what was lost. We are so thankful for everyone that plays a role in her recovery.