Sunday, March 24, 2013

She could be Anna. Anna could be her.

Earlier last week, I came across an article on CNN that was meant to highlight whether America had finished what it had intended to with the war on Iraq.  For me, the article was about spina bifida.  Specifically, a little girl named Noor living in Iraq who needs help.  Noor's life was saved by American soldiers who arranged for her to be transported to the US for medical treatment when she was three months old.  She underwent surgery to correct her spine and have a shunt placed due to hydrocephalus.  Anna had both of those surgeries when she was less than a week old.      

The main difference between Anna and Noor is where they were born. Anna has access to the best hospitals in the country.  She lives in a community where it's okay to have a disability.  She attends school with other kids her age and receives an overwhelming amount of support. 

Spina bifida in and of itself is usually not fatal but complications from spina bifda can result in death.  I cried as I read that article.  I cried at the American doctor's prediction for Noor's future.  It's absolutely heartbreaking because it doesn't have to be this way.

Anna has a handful of specialists but the one she sees most frequently is her urologist.  Twice a year, she has an ultrasound of her bladder and kidneys.  Her urologist is constantly praising us for our care and reminding us of how important it is to preserve Anna's kidneys.  If you've read here for long, you know that we had problems in the past (here and here) with our previous medical supplier of cath kits.  I can't imagine Noor's family not knowing if or when they will receive more supplies.

CNN posted a follow-up article a few days later with a link to Childspring, who is accepting donations that go will directly to help Noor.  Unfortunately, they are unsure if they will be able to help her.

This has left me shaking my head at how messed up the world can be.    


Hilary@MooHooVille said...

i read that same article on cnn and thought of your family, of anna. it is heartbreaking to see such a profound example of inequity in the world; that location can determine a sweet child's future so dramatically.

Anonymous said...

Wow, this is heartbreaking.

This might be a weird question but I was wondering if you cath her according to the frequency of fluid intake during the day? Like if she has a big drink or drinks more than usual would you cath her additional times to accommodate? How do you balance that out?


Sarah said...

Erin - not a weird question. Anna will feel uncomfortable just like you or I would feel and ask us to cath her. She also still wears a pull-up in case she leaks. If her bladder is full, she will pee out, which is good b/c less chance of kidney issues but bad in that she can't go w/out a pull-up. Catch 22.

kdliberty said...

I thought of both Anna and boy named Alex (I follow his Mom's blog - Alex is adopted from the Ukraine and was never cathed until he came to America. We are so lucky here.

Btw, Anna is probably to little for it now but eventually she should be able to add a pad to her pull-up. It really helps with leaks out the side. Weird but true...

JEN said...

I too read that article and thought of Anna. I know our healthcare is flawed in some ways, but we really are extremely fortunate.

Anonymous said...

Hi Sarah - Thanks for answering my question. I have learned so much about Spina Bifida and what these kids face and also what they can overcome through this blog.