He's not Spina Bifida

In one of my groups, we had a new parent join, and another parent gave her the advice that this isn't spina bifida you are expecting, it's a baby. She told her to enjoy the pregnancy and focus on the fact she has a baby coming.

I remember receiving that advice myself not too long ago. Well, almost two years ago! At the time, I yelled at the monitor, "HOW???", but it was the best piece of advice I received. At first, I was consumed with finding out information, uncertainties, concerns, all that good stuff when you get a diagnosis such as it's "just spina bifida."

But then it shifted. I decided to enjoy the pregnancy, I decided to embrace the baby, and come what may. Sure, each doctor's appointment brought issues to the forefront, but I resolved to have my moment and move forward.

I did have a good pregnancy. I was pregnant in the summer, he wasn't due until the end of September, and I loved it. I loved the clothes I was able to wear (sooooooo cute), I loved that I wasn't itchy (winter pregnancy gave me dry skin), and despite being diagnosed with gestational diabetes, I felt great.

When we were given the diagnosis that he had spina bifida at around 24-25 weeks, I hadn't felt him move much. He started going crazy then. At first, I was upset. It was bittersweet, but it eventually became reassuring.

When people would ask the normal pregnancy questions, it was difficult to not answer, "My baby has spina bifida." There was this sense of that was what he was, if that makes sense. He became different with that diagnosis, and I had to work past it. Even when he was a newborn, I still associated him with spina bifida. He's not spina bifida, though, he's a baby, a toddler, a person. I think he'll get this tag a lot as he gets older. He'll be "that kid with spina bifida", but to his mother, he'll be her son.

Two years ago

Two years ago I was pregnant with G. I had seen my midwife once as I was planning a homebirth, but my ob/gyn I normally saw wouldn't see me. I was very sick at 11-13 weeks. I remember calling and asking to be seen, and they said they couldn't see me for over a month. I knew at that moment I wouldn't be dealing with them.

Being I was going to have a homebirth, I wasn't going to have an ultrasound unless medically indicated. This was going to be a hands-off kind of birth. I felt very strongly that I needed to have an u/s, though, because I felt like something was not right, and I talked to my husband's cousin who is an u/s tech. She agreed to do the u/s, but it wouldn't be an official one. I was okay with that.

I remember being late for the appointment. "Marilyn" was waiting for me at the entrance of the hospital (a very small, rural hospital), and we went back. She asked me if it was okay if someone observed, and I said that was fine. She did the u/s, showing the other girl, and explaining things. She didn't take very long, though, and she kind of rushed through it, I thought. Afterward, as we were talking in the parking lot and saying goodbye, Marilyn said she had to mention something.

I felt this sense of, "Okay, here it comes, I KNEW it." She told me the ventricles were enlarged. Ventricles? What was she talking about? I noted the words in my head as she continued talking. I was around 19-20 weeks at the time, and she said that sometimes they resolve in a couple of weeks. Her recommendation was to have an official ultrasound in a couple of weeks by a different tech and read by the radiologist. She told me not to worry, but she definitely recommended I be seen again. I thanked her and told her I appreciated her taking the time to do this for me.

At home, I researched on the internet. At first, I didn't type in ventricles, but vesicles. When I did type in ventricles and got more information as to what it might entail, I prayed. Things mentioned were hydrocephalus, spina bifida, other problems that resulted in death, and many even mentioned it could signify nothing.

I found a different doctor, since my ob/gyn wasn't receptive to working with me. I was still clinging to the hope that I would be having a homebirth. I met with Dr. A, and I really, really liked her. She was perfect, and if I ended up having to deliver at the hospital, the facilities were acceptable and comfortable. She also felt the enlarged ventricles could resolve on their own, and we scheduled an ultrasound that would be about three weeks from the first one. Dr. A also mentioned she'd be on vacation at that time, but she wanted to know if it would be alright if I didn't get the results until later. I was fine with that. I left that day, feeling calm and reassured. I was leaving my fears in God's hands, and if something was wrong, there was nothing that I could do about it. I didn't stress or worry those two weeks. I really didn't. I did my initial homework, but I let all of it go. I trusted in God, but I knew, I just knew, that something was not right.

It's weird to think that it was two years ago. It truly seems like it was a few months ago we were dealing with the knowledge. I don't remember the date of that u/s, but I remember it was in May. I do remember when we got the results of the second u/s. That was June 15.