A father whose baby is diagnosed with spina bifida wrote me an email the other day. He sounded worried and sad for his child's predicament. I remembered the day when I learned that Anya has hydrocephalus. I pictured her as a baby with a very large head, sunset eyes, few hair -- someone who has been painted by our local media. When I went to the neuro surgeon, he discussed to me what to expect about Anya - she may have abnormal intelligence, a cripple -- in other words, she is not going to be normal. But for me, she is. She is just perfect.
I am attempting to complete a blog about Spina Bifida in the Philippines. My capacity is to research about it - qualitatively and quantitatively. I would want to do a census, go to every barangay health center and ask if there is one in their community. I might start in LB, then the nearby barangays. I really don't know how to start. But I know, one day, this will come -- create an about this congenital condition, eventually help our lawmakers create a law that requires milk and bread to have folate on it, have partnership with neuropediatricians and nurses on how to take care of kids with spina bifida.
As of now, this is still my dream. Create the social landscape of spina bifida in the country - get the numbers, have support groups, do a paper . . . I hope our dear Lord will guide me through.
This is for you Anya. What mommy does is for you.
What is spina bifida? - Of all the references I read, this is the clearest definition of spina bifida: Spina bifida is a birth defect that involves the incomplete development of ...
4 years ago