I was born with Bladder Exstrophy, back in the Ice Age when wooly mammoths roamed the earth. Back then there were no support groups for parents, family members or even BE patients. We basically rolled up our sleeves and coped as best as we could. Fast forward a couple decades and there are multiples of resources for those looking for information and support. Basically, today’s mum & dad and their BE/CE child have access to medical information which was not readily available back during the Ice Age.
What confounds me, when I read messages from parents and family members of BE/CE patients is how difficult it is. How their child is suffering from a major case of depression and shame. While I was growing up my parents never allowed me to be ashamed of my exstrophy — why be ashamed of something I have no control over.. it would be like being ashamed that I was born with brown eyes instead of hazel, nothing can be done about the past. My parents raised me to be strong, being able to hold my head up high and deal with my birth defect in a straightforward manner.
I’ve had an interesting surgical history – first surgery in June 1971 at Sick Kids, while still an infant. Next in 1975, then 1983, 1988, 1992, a few teflon injections, 2007 .. and several angioplasty procedures to insert a PIC cos I have crap veins.
I’ve had NG tubes shoved down my nose and into my stomach, many IVs, way too many blood draws, a cut-down when I was 4 while in hospital (rushed into emergency midnight surgery), found out I have a slightly smaller than normal aorta, low blood pressure, reflux of the left ureter AAAANNNDDD I’m lactose-intolerant to cap it all off. All of this crap and I have never been depressed over my situation; annoyed that my body doesn’t obey me, but never depressed.
Am I a special case of a happy go-lucky individual? Nope. I can be moody as all hell. But the reason I have not been depressed or ashamed of my exstrophy is because of the way I was raised by my parents. So it angers me when I see parents of underage BE patients lamenting “my poor baby, his/her life will never be normal”… what is normal? If you hold onto such an attitude the child will pick up on it. Exstrophy, for my parents, was devastating in that they had no one for support. But they accepted my exstrophy as a learning experience from which both they and myself could grow from.
I am a strong person. I have been dealing with medical suppliers since I was 13 years old, booking my own appointments since I was 14 — I was encouraged to take control of my own care. And if these parents did the same for their kids I wouldn’t be surprised if the next generation of BE adults will be just as strong and capable.