Explaining Spina Bifida: Finding out.

Hi all! Erin again. Here is my latest post on Explaining Spina Bifida, from my blog Tear & Mend. All the mothers reading this have their own experiences and each of us can learn from one another. Feel free to post your story as a comment!

There are a few different ways you can find out your baby has Spina Bifida. The earliest test is the Quad Screen, done around the 16th week of pregnancy. The quad screen measures high and low levels of AFP, among other things. High levels of AFP are what tips the the doctor off to possible NTDs. Many times, this test returns false-positive readings, creating unnecessary anxiety. My husband and I waived the test. We would not terminate a pregnancy. I would not have an amniocentisis (the only way to confirm an NTD that early on). Knowing would have essentially done nothing for us. There was no history of birth defects in either of our families, and I was only 25 years old.

Another way to find out is at your 20 week ultrasound, or a subsequent ultrasound. They examine the babies body, take measurements, etc. Nothing odd showed up on our 2o week. He looked perfect. No reason to worry. However, we found out at 34 weeks, during a routine growth ultrasound.

The third way to find out is at birth. This, to me, must be the most traumatic way to find out. You have no time to prepare. No time to figure out what the heck Spina Bifida is. No time to rejoice in the birth of your child because you are shocked by the immediate realization that something is wrong. Because trust me, it is obvious.

So, your baby has Spina Bifida. That sucks a little. But honest to GOD, the worst part is the waiting. My Goodness, the waiting. It’s AWFUL. It’s also one of the reasons that I am happy I didn’t find out until I was 34 weeks pregnant. Donovan was measuring four weeks ahead and I insisted on a growth ultrasound because hi, I’d like to know if I’m going to go into labor any minute now. So, I wobbled into the u/s room and found out my baby was breach. And I FREAKED. I’m going to have a c-section. Kill me now.

Then I wobbled into the OBs office SOBBING because of the breach news. But, little did I know, there was more. I’ll never forget the next few minutes. She said she was happy I had insisted on the u/s because there was something wrong with my baby. But, she couldn’t tell me what. WHAT? No, I’d have to go to a perinatologist for that. All I knew was that his ventricles were enlarged. I called my family in a panic. My sister is in school for PT and knows all about the brain and stuff, so I called her to tell her to Google and read and read and tell me what is wrong with my baby. She found out about hydrocephalus, and told me not to Google it, that it was unlikely and a worse case scenario. HA. If only that’s all it was.

Two excruciating days later, we go to the Peri. They ask me if I know why I am there. Um, yes. Something is wrong with my baby. They ask if I know what, and I say, “um, no…that’s what you’re supposed to tell me.” Well, they knew already. You could just tell. They proceeded to the Level II ultrasound and the Peri came in and told us our son would be born with Spina Bifida. I, again, freaked out because I had no clue what that was. But, man…it sounded BAD.

Anyway, all of this is an example of why the waiting is the worst. It’s the unknown. Like, oh, my baby kicks me. Does that mean his legs work? Oh, no…they say it could just be the amniotic fluid moving him around. And so on. It’s also very difficult because chances are, you don’t know anyone who has a baby with SB. I didn’t. I would have been so comforted just to talk to someone who was walking through what I was going through.

So, that is finding out. I wont lie, it’s not fun. I still remember it as one of the worst days of my life. But it happens, and then it’s over. And you move on. And you have your baby. And he is perfect. No matter what’s “wrong” with him.