The story of Randi
My 12 month old son, Elias, was born with a complex birth defect called Bladder Exstrophy (BE). Along with the BE he was also born with epispadias and hip dysplasia. When he was born he went straight to the NICU and I didn’t get to see him until later that night. He stayed in the NICU for a week and came home with his bladder still exposed. At every diaper change I had to cover his bladder with plastic wrap to keep it from becoming irritated or dry.
On April 13th Elias had an 8-hour surgery to put his bladder where it belonged, reconstruct his entire urinary system, repair the epispadias and the hip dysplasia. After his surgery he was placed in a cast from his toes to his hips. He was on a ventilator and sedated in the PICU for the first 4 days after surgery. We stayed at Children’s for a month.
When he was released, he came home with tubes in his bladder and both kidneys. Since having Elias I have learned so much about so many things in the medical field that I would have never dreamed I would ever have to know.
It’s become my mission in life to raise more awareness to bladder exstrophy. It’s so rare that a lot of doctors and other medical professionals have either never seen a BE patient or never even heard of BE. I’m determined to change that.