Discover More About Our History

A comprehensive view of Katelyn's journey and the story that shaped our mission.
Scalloped edge resembling clouds.
Infant smiling on patterned chair

About Katelyn

Katelyn was born on October 4, 2012, with Spina Bifida (myelomeningocele), an open neural tube defect in which the spine/spinal cord does not completely form and protrudes 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.

Irregular wavy silhouette on white background

Medical Challenges and Early Surgeries

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.
Furthermore, she had spinal surgery at 1 day old to close 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 cerebrospinal fluid from her ventricles. She has had 2 more surgeries since then to repair hernias and have a GJ feeding tube placed.

Happy child stacking translucent blocks
Scalloped edge resembling clouds.

Challenges Along the Way

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 0.1 L 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 December 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 there was a sudden onset of breathing problems. 1 day after coming home, she had several more apnic episodes/blue spells that 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.
Young boy engaged with educational toy
Child playing with colorful building blocks
Irregular wavy silhouette on white background

A Turning Point Toward Improvement

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 0.5 L of 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!

Scalloped edge resembling clouds.

Where is Katelyn now?

image 1