V – Vetebrael Anamolies: Terminale Filum with minimal movement in the Conus (classified as Tethered Cord with no lesion)
A – Anal Atresia : Low Imperforate Anus with Rectovestibular Fistula (Colostomy 7/15/06 by Dr. Joe Iocono (UK), PSARP – 8/14/07 by Dr. Marc Levitt (CCHMC) and Dr. Joe Iocono (UK) at CCHMC, Closure by Dr. Joe Iocono (12/20/07))
C – Cardiac Anamolies: Complete AV Canal Defect with Involved Valves (Repaired via Open Heart surgeries on 2/28/07 by Dr. Pirooz Eghtesady (CCHMC) and 3/10/07 by Dr. Pirooz Eghtesady (CCHMC)) Residual VSD and murmur, Congenital Heart Disease
T – Tracheal Anamolies: Tracheal Bronchus (also known as Bronchus Suey, Pig Bronchi, or Pig Lungs), Reactive Airway
E – Esophageal Anamolies: GERD, Feeding / Swallowing Difficulties (diagnosed Failure To Thrive 9/1/06- NG tube placed for continuous feeds)
R – Renal Anamolies: Congenital Kidney Duplication Anamoly (3rd Kidney RT), Kidney Reflux (LT)
L – Limb Anamolies: No known Limb Anamolies at this time.
Other complications include:
Neurogenic Bladder with EXTREME high pressures (pressures of 160 on Urodynamics studies), Large Bladder Capacity (120CC) – CIC 4X daily to alleviate pressure.
Chiari Malformation – ACM1 – (6 mm herniation of the cerebellum)
Kyleigh is always full of surprises medically. We have nicknamed her 5% Kyleigh and she has lived up to that with flying colors. If its WEIRD or different or simply “should not be” then she will have it or do it!!!
