He has a little spina bifida

"He has a little spina bifida."

I can still remember sitting on the exam table as my doctor-my OB, the one who helped us through infertility, who fought alongside me to get pregnant, who had; up until now; been one of my favorite people-said these words to me.

I asked what that meant. She explained that there was small space in his spinal column between the vertebrae, where the spinal column didn't form all the way.

I was only 26 weeks pregnant. We had just barely found out that we were having a boy, and Matthew wasn't even his name yet. (Though looking at him now, I can't imagine he was ever anything but Matthew).

She sent me to a specialist in maternal fetal medicine. Long story short, they did a TON of tests and determined the defect was closed, meaning the rest of his body had formed properly over his spinal column, though it was still open. These defects are generally called spina bifida occulta, because they are not seen from the outside. Some people never know they have it. So they told us to go on with business as usual and not worry. And so we did. They never told us the possibilities. Good or bad. They didn't tell us anything.

December 2016, and after twenty long and difficult hours of labor, I gave birth to a 38.5 week old, 5 lb 9 oz, 19 inch long, healthy baby boy. Or so I thought. After he was born and he was laid on my chest, he was instantly taken away to the warmer. As my doctor started to stitch me up, I started to hear chatter. Questions that my husband was answering. "Yes we knew" "They did an amnio" "They told us it was a closed defect".

Apparently NO ONE at the hospital read my chart (my OB office was through my delivering hospital), and knew he had spina bifida. Possible. A little. Whatever.

They eventually brought him back to me, and there it was on his back. A nub. It sort of looked like an inverted belly button. We had been nicknaming him Monkey since during pregnancy, so we joked it was his tail.

The next morning, the pediatrician on call came in and stated that they'd want to see him the first day we could get in after leaving the hospital. They checked him out and said he had great movement and strength, and so there was no reason to rush or hurry anything.

Before leaving, they also did several hearing tests, which he kept failing in his left ear.

So not only did we leave the hospital unsure if our son had a little spina bifida, or SPINA BIFIDA, but also with a lingering fear of hearing loss as well.

I went home feeling so lost, empty, confused, and angry. Angry that no one had known. Angry that I had been told to expect nothing when there was something. Angry that I was angry and not just happy. Angry that those first moments had been taken from me. Just angry.

The next day we saw the pediatrician, whom we had chosen and was different than the one we saw at the hospital. She agreed there was no rush, and referred us to neurology at Children's Hospital of CO. If only I had known then the roller coaster that one phone call had started.

(TO BE CONTINUED)