Malachi, My Angel

Posted on Posted in Neural Tube Defects, Religious Perspectives, Spina Bifida

by S.A. The day you realise your world as you know it has changed forever is a startling one. One that hits you like a ton of bricks. One when you question how the rest of the world is able to keep moving and functioning, oblivious to your the pain and suffering. That fateful day for me was the 10th November 2016. I received the news that my expectant child, a precious baby boy, had an open spina bifida and Arnold Chari Malformation Type 2. Even as those words roll out my mouth now, I still cannot believe that this was and is my reality, […]

Rage Over Restrictions

Posted on Posted in D&E, Hydrocephalus, Neural Tube Defects, Spina Bifida

By H. R. The pregnancy was very normal and everything seemed to be going fine. I had the free-cell DNA test and that came back normal, so didn’t feel the need for any second trimester screenings. I do sometimes regret that I didn’t have the second trimester screenings as they might have let me get this information sooner, and maybe the termination would have been easier physically. But I don’t know that, so I’ve had to let that regret go along with so many other regrets as I work through this grieving process. The 20 week level II anatomy scan at the perinatologist’s took a long […]