Living with VACTERL Association

My Story – Submitted by: Gerald

I was born in 1957 with VACTERL Association. I have a Klippel-Feil in both my cervical spine and lumbar spine (L1-L4 congenitally fused), a syrinx in lower cervical spine, urinary tract fistulas, imperforate anus, and a horseshoe kidney. I have a history of distension, pseudo-obstruction (for which I have been hopitalized and NG’d several times), two obstructions due to adhesions, and these were surgically repaired. I also have a syrinx in my lower cervical spine which is stable. I was also born with an imperforate anus and required a pull-thru at birth. I had laminectomies in both my cervical and lumbar spines (L1-L4 is congenitally fused with hemi-vertibrae, scolioses, severe stenosis in the foramen and central canal). I have a horseshoe kidney but do not have any renal issues that I am aware of, though I am prone to UTI’s. I am largely incontinent and have severe motility problems and am sometimes unable to pass stool for a week at a time. Continue reading