Katelyn was born October 4, 2012 with Spina Bifida (Myelomeningocele), an open neural tube defect in which the spine/spinal cord do not completely form and protrude through the spine and opening in the back, causing nerve damage below the defect location.
Katelyn’s myelomeningocele is at L4/L5-S1, which is low on the spine, but she does not have much feeling in or move her legs as much as we expected. She is quite the fighter, so we are hoping this improves as she grows.
She also has other common conditions associated with Spina Bifida – Hydrocephalus, Chiari Malformation, Neurogenic bladder/bowel, club feet, inguinal hernia, hip dysplasia, and tracheomalacia. She spent 70 days of her first 6 months of life in the Nationwide Children’s Hospital and has had 4 surgeries.
She had spinal surgery at 1 day old to close up the opening in her back. She had a second surgery at 1 week old to place a VP shunt in her brain to drain excess cerebral spinal fluid from her ventricles. She has had 2 more surgeries since then to repair hernias and have a GJ feeding tube placed.
Since she was born 5 weeks premature, her lungs were not fully developed and she came home from the NICU on October 23,2012 on 0.1L oxygen and an apnea monitor. We quickly became accustomed to the new routine and our new life… Katelyn was doing great! In early Dec, she no longer needed oxygen or the monitor. 2 weeks later, on Dec 26, she had a blue spell in her grandmother’s arms. She stopped breathing, turned blue, and went limp. Katelyn was revived with rescue breaths and stimulation at home and admitted to Nationwide Children’s Hospital that day. She was discharged 6 days later with no answers as to why the sudden onset of breathing problems. 1 day after coming home, she had several more apnic episodes/blue spells which required rescue breaths. She was admitted again for 49 days this time and had multiple tests to check her shunt, spine, sleep study, acid reflux study, bronchoscope, MRI, and ultrasounds.
The Pulmonary Team at NCH decided to put in a feeding tube to prevent formula from aspirating into her lungs. 3 weeks after the feeding tube was placed, her oxygen requirements decreased significantly during her awake hours. She still needs 0.5L oxygen when she is sleeping due to sleep apnea/shallow breathing, but is off of oxygen when she is awake . This was a drastic improvement! We are still working with the Pulmonary, ENT, and Neurosurgery teams at NCH to figure out her nighttime oxygen saturation issues.
Katelyn is growing and developing at her own pace…. and she is one happy, smiley baby!