Kayla was born on March 28, 2012 and welcomed into the family by her parents, John & Melissa (Rapp) Kud, and big sisters, Gianna & Aubrey.
She is a beautiful and wonderfully made child of God, but with many health issues which affect her development both physically and academically. She spent 34 days in the NICU, has undergone multiple surgeries, has undergone multiple tests and been hospitalized on numerous occasions. Kayla sees physicians in 13 specialties as well as 8 therapists for speech, physical, developmental, occupational and nutrition. At age 3, she only weighs 17 pounds and is not scooting, crawling, walking or talking.
Despite many genetic tests, Kayla remains undiagnosed. The doctors have not been able to determine what caused the congenital defects. She is currently participating in a study with the National Institutes of Health in an effort to find a diagnosis and better understand her medical conditions. Her medical issues are many and still evolving. This is what we know today about her medical condition:
* Profoundly Deaf (left) & Moderate Hearing Loss (right)
* Visual Impairment
* Heart Defectsâ€”Bicuspid Aortic Valve & a hole in her Heart
* Kidney Defectsâ€”Left kidney removed in March 2013 before 1st birthday
* Tethered Spinal Cord â€“ Surgery to spinal surgery in November 2014 to untether the cord
* Born with Cleft Palate which was repaired in September 2012
* Fed 100% by Gastronomy Tube (G-Tube)
* GERD (Gastroesophageal reflux disease)
* Hypotonia (low muscle tone / reduced muscle strength)
* Reproductive Abnormalities
* Significant Developmental Delaysâ€”approximately 2 years behind; Not talking, scooting, crawling, or walking.