NEW updates, "diagnosis", and more for Kayden
Kayden was born on April 2nd, 2019 and unbeknownst to his parents at the time of his birth, they learned that the name Kayden means “fighter”. Little did they know that their newest and 3rd child would be living up to that name. Kayden was born with a dermal sinus tract and suspected tethered spinal cord, which was not detected in utero. He underwent spinal surgery at St. Louis Children’s Hospital at 14 months old to remove the DST and untether his cord. Just prior to that surgery, we learned that he had also developed a Chiari Malformation Type 1.
Our rare disease journey started right after Kayden was born when the doctor’s and nurses noticed an abnormal dimple on Kayden’s lower spine. It was suspected that he had a dermal sinus tract that possibly connected to his spinal cord and that his spinal cord was also tethered. The first year of his life was challenging as we had to basically wait and see what the MRIs showed throughout his first year. He was scheduled to have surgery at 12 months old, which coincidentally happened to be right as COVID and lockdown began. His surgery was pushed back two months and happened on July 1, 2020. During his pre-op testing, it was discovered that he had also developed a Chiari Malformation Type 1. He is currently being monitored annually for his Chiari and for the potential for his spinal cord retethering.