A Glimpse at Spina Bifida


“I just believe in myself and give the rest to God. I think you build your strength as you go. You become tougher each day. You realize you can do certain things that no one else thinks you can. I don’t like having spina bifida, I just accept it. I am positive and get through each day. What else can I do?”

(from someone with Spina Bifida, taken from “Transition in young adults with spina bifida: a qualitative study” of Child: Care, Health & Development journal, published in 2011)



What is Spina Bifida?

Spina bifida is a birth defect that begins with the failure of the neural tube closure during that critical development when the baby is still a fetus. It becomes a chronic health problem as the child grows and they usually experience difficulty with urination and defecation and respiratory problems. Others with Spina Bifida have skin breakdown and difficulty in movement.
Spina Bifida is a complex health condition that can involve life-threatening complications when a shunt is surgically inserted to help treat the symptoms. Neuropsychological challenges can cause individuals with Spina Bifida to depend on their parents or caregivers. This can lead to limited behavioural autonomy and overprotectiveness by the family. Young adults with Spina Bifida struggle with bladder and bowel management that lead to extremely stressful experience for them and their family.

What is it like living with Spina Bifida?

            Adults with Spina Bifida desire to rely less on others for care as they want to be more independent. As one individual with this condition states, “I didn’t want to do it. I was really scared I’d hurt myself even if it hadn’t hurt when he or my mom did it before. I didn’t want to do it at school either. I didn’t want anyone to see. But I had an accident one time when I didn’t do it and wet my sleeping bag at a sleepover. I rolled it up but always catheterized after that. My dad made sure too . . . my parents should have made me do it sooner. I was almost in 6th grade when I started catheterizing” (Ridosh, Braun, Roux, Bellin, & Sawin, 2011).

            Most people with Spina Bifida struggle with stigma and prejudice against them even when it comes to getting a job. Someone with the condition stated, “I would really like to find a job and work, I really would. I would like to have more opportunities for jobs, they are really hard to find and if so only want you a few hours or days a week. I’d like to work full time” (Ridosh, Braun, Roux, Bellin, & Sawin, 2011). Life is even harder for them when other people see spina bifida as if it is contagious.

            Some individuals went through a difficult childhood because of Spina Bifida. A testimony from one patient stated, “I didn’t want to get up if I messed. They really thought I could control or should . . . and I did try new things but in the gym it was hard because I wore a diaper . . . people not feeling I could do normal things because I was in a chair, just the kids making fun, the looks. I didn’t really know anybody else with spina bifida unless I came to clinic” (Ridosh, Braun, Roux, Bellin, & Sawin, 2011).

How useful is a good support system for people with Spina Bifida?

“I’ve gone to the adult camp for 3 years now but I never went when I was younger.I was the only one in my school with spina bifida. Now I know more. I didn’t really care about it (self-management) till I met other kids.
I think camp is really helpful. You are kind of on your own but not if you know what I mean…You were given goals to help yourself, to move forward. I guess just meeting others (with spina bifida) also helped. There were older kids there that I saw could do things themselves” (Ridosh, Braun, Roux, Bellin, & Sawin, 2011).

            Kids and adults with Spina Bifida need to know and feel that they are not alone and that there are others who understand their feelings and thoughts. It is important to provide them an environment where they can support and strengthen each other. The best person to understand and accept someone with Spina Bifida is another individual who has a lived experience of the condition as well.

Keeping the Faith in spite of Spina Bifida

            Sometimes bad things happen to good people but this does not mean somebody has to take the blame. There are certain things we do not see but all we can do is put some FAITH on the good things we have and are around us.

“It’s no ones fault I have spina bifida. It just happens. I have friends who have diabetes, have been in car accidents. Life isn’t easy for them all the time either. My family has always been there for me. I believe I can accomplish most things. I might have to make an adjustment here and there but most things I can do. I go to church and I know this helps my family too” (Ridosh, Braun, Roux, Bellin, & Sawin, 2011).


Reference:


Ridosh, M. M., Braun, P. P., Roux, G. G., Bellin, M. M., & Sawin, K. K. (2011). Transition in young adults with spina bifida: a qualitative study. Child: Care, Health & Development, 37(6), 866-874. doi:10.1111/j.1365-2214.2011.01329.x

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