I suppose it started in the usual way. Boy meets girl. Boy and girl make baby. Girl throws up a lot. Boy struts around, proud to show off his virility as his wife's belly grows. Boy and Girl go to the doctor to find out the gender and are so happy to see their daughter in the fuzzy black-and-white ultrasound images. But before they leave the doctor's office, both of them hear the words "spina bifida" for the first time....
From there things gets pretty unusual pretty quick. There are lots more doctor appointments. Lots of unfortunate googling of medical terminology. Lots of hand holding. Lots of tears. Lots of uncertainty. There were questions about treatment options. Questions about function. Questions about Girl's sanity as delivery day grew closer. All the books on pregnancy, even the book dubbed the "Pregnancy Bible" failed to explain what the boy and girl could expect.
Then, finally the baby came. A beautiful little dark haired princess.... conceived on Christmas day, born into a world of bright lights and beeping monitors. And she was perfect. NICU was a scary place for the girl and boy but they made it out and took their baby home. Girl realized that she never wanted any other woman to be as scared as she was during her pregnancy. She knew it was time for a New Testament to be written to the "Pregnancy Bible". One that covered medical questions, prenatal surgery options, and how to make it through a diagnosis to meet the baby that is anything but a medical label.
Girl queries a disability publishing house after creating a sample chapter and outline (posted elsewhere on this blog). She lines up medical personnel and others for interviews. She uses her background as a teacher and her education (MA in psychology) to put together something she feels will be a useful resource to expectant moms. She is proud of what she has done and the publisher thinks the book idea is good....just not cost effective to publish. They tell her, "We met about your manuscript. Everyone agrees you are well-qualified and an
excellent writer! Your tone is perfect. But, between the fact that the incidence of SB is low and
the window of opportunity to reach this small audience is so narrow, we just
can't take it on. I'm assuming you've already thought
of this, but our recommendation is to approach the SBAA and see if you can get
funding provided by grants to get this booklet published and put into the hands
of those women who would so benefit from this information...."
So, girl figures "Ok! I'll do it myself!" and that is what she has decided to do. She is querying the SBAA but even if they cannot assist, the girl is going to do all she can to get this updated information to preganat women who want to know what the heck is going on and what they can expect during their pregnancy, in NICU and the first year of infancy. You can help in this effort! Simply go to the "How you can Participate" link at the top of the blog for more information.
According to the Spina Bifida Association, Spina Bifida is the most common permanently disabling birth defect. It happens in approx 1 in 2,000 births. Help the rest of us spread the word, help spread the information, help spread the hope!
No comments:
Post a Comment