For us, one of "those" days was January 7, 2011 - the day we found out Jackson had Spina Bifida. It was a Friday.
I was 19 weeks pregnant and had just gotten blood work done for the 2nd trimester screening. I had had a "normal" pregnancy. No morning sickness, felt great, no spotting, everything seemed hunky dory. When our OB/GYN had brought up the 2nd trimester screening as an option we didn't think anything of it. There was nothing wrong, but what's the harm in confirming that, right? Sure doc, let's do it. We were told "no news was good news". If we didn't hear from them, then the results were all good.
And then my phone rang.......
In a blur, I remember Dr. Page telling me that the results came back positive for Spina Bifida. What!? There isn't a family history of it and I had been taking prenatal vitamins. He said even though the test came back positive, it didn't mean that Baby Smith had SB. It just meant that there was a greater chance that Baby Smith had developed it. {I say Baby Smith b/c at the time we didn't know gender}.
Next step, schedule an ultrasound/genetics appt. with Strong Perinatal Associates (SPA), the specialists, to confirm. I learned all of this over the phone. At work. I was freaking out. Would've it been better to have learned in his office? Probably not. He would've called and said to come in and that would've freaked me out too. Either way, unexpected and unsettling news.
But now I had to tell Jason. He always was nervous about having a child because of the "what-ifs". What if our child is disabled? What if something bad happens during delivery? What if.....our child has Spina Bifida? I told him what was going on and we went to the appointment. I didn't tell anyone else what was going on. Why have everyone worry if there was not needed, right? It was just an increased chance of having a child with Spina Bifida, not a diagnosis. That's what the doc said.
January 7th, 2011 - our "D" day....Diagnosis Day. Our appointment with SPA.
We first met with Stephanie, a genetic counselor at SPA. She went through our family histories, explained the test results and gave an overview of what Spina Bifida was - the who, what, where, how and why's of it all. We had heard of SB as someone we went to high school with has it, but other than that we didn't know much. It was nice to get that explanation. Our results showed a 5% chance of having a child with Spina Bifida. 5%, that's it? That means that there a 95% chance that Baby Smith is just fine! That's pretty good odds, right?
Wrong. But we didn't find out just then. Our appointment with Stephanie was right before lunch. Their office closes for lunch from 12 - 1. We were told to go grab some lunch and then come back for the ultrasound. The ultrasound will either confirm the diagnosis or show us that everything is fine. You've got to be kidding me!! We've been worrying about this all week and now we have to wait some more. We went to lunch at Wegmans thinking "it's okay - chances are Baby Smith is just fine".
Included in all of the info that Stephanie had given us prior to the ultrasound were signs of what the techs/doctors would be looking for during the ultrasound. Terms like "lemon sign" were thrown out there and descriptions like a break in the "railroad tracks" of the spine were used. Then it happened. We both saw it. It was right there on the screen. The tech isn't supposed to say anything but we knew before the doctor came back in. Spina Bifida.
I don't even know how to begin describing what I was feeling at this point. Shock, guilt, disbelief, worry, anger, sadness. It was all there plus a lot more. Coincidentally, we also found out that Baby Smith was a BOY! So mixed in was a little happiness, but not much. The gender reveal was definitely overshadowed by the diagnosis.
It took a while for the doctor to come back in, so it was just Jason and I in the room. Alone together with our thoughts. We distracted ourselves with baby names. I had already told him that I wanted Timothy to be Baby Smith's middle name if baby was a boy. My parents only had girls so there was no one to carry on the family name unless my youngest sister became an unmarried spinster. And that's not likely to happen and Amanda and I are already married. I also pointed out that we got married on his parent's/grandparent's anniversary so we needed a little "King tradition" involved in our lives. And no offense to my parents, but King just wasn't going to work. Timothy, after my dad, was much better :) Secretly, I had liked the name Jackson for a long time. It didn't take too much to convince him that our little man was going to be Jackson Timothy.
Jason did however push for Bob. The smart ass that he is said that Bob was a good name and if our kid was dyslexic that he'd still be able to spell his name. Bob was never in the running......
So Baby Smith is now Jackson Timothy Smith and he has Spina Bifida.
We're trying to be positive, but it's not working that well. The doctor comes back in and officially confirms the diagnosis. He begins talking about what will happen during the rest of the pregnancy, how delivery will be handled, what happens after the baby is delivered, prognosis, expectations, living with SB, surgeries, Hydrocephalus, shunts, braces, therapies, learning disabilities, specialists, worst case scenarios...way too much for me to comprehend. We're still trying to take in the diagnosis.
He also mentions our options....continue or terminate the pregnancy. I know he mentions them because he has to. But we just found out we're having a boy. He already has a name. Termination was not an option. It never was an option. Before going into the appointment, we had both agreed that no matter what termination was not an option. We've loved this baby since the day we found out we were pregnant. How could we terminate just because he had SB? People live with SB every day.
We went back in to Stephanie's office and talked a little more about what we just learned. She was quick to point out that it wasn't anything we did and sometimes it just happens. And then I started bawling. I had been thinking for a week now that this was all my fault. From the time between the phone call and the appointment, I had been looking up SB on the web. {Side note: Don't do this! It's never a good idea to Google stuff like this! Trust me. Look for SB groups or something. Anything but Google.} There is no known cause of SB but there is a link between the lack of folic acid in the mother and SB in the baby. If only I had taken more folic acid before I got pregnant. Maybe that would've changed the outcome. Immense guilt flooded over me. No matter how much she tried to say it wasn't my fault, I felt like it was. I still do. That feeling never goes away.
She gave us some info that we could share with our families. Oh man, now we have to tell our families. We're still trying to process this ourselves and we need to tell them what's going on. We have no doubt that they will be supportive, but still. Just as hard as it is to hear this information, it's just as hard to tell others about it. Not because we were ashamed or embarrassed by it, just that there was (and is) so much uncertainty that goes along with it. No one in our family had ever gone through this. None of our friends. This was a new frontier. Many questions were unanswered at this point.
We left the office and headed home still shell-shocked and stunned. It was a long ride home. Personally, one of the longest hours of my life. I cried the whole way home. I just wanted to get home, curl up on the couch and sleep the rest of this day away. Not that it would change anything. We kept the info to ourselves until Sunday evening and then we told our parents. As expected they were very supportive (and still are) and also excited to learn that Baby Smith was Baby Boy Smith to be named Jackson Timothy. They took care of spreading the word to the rest of our family who were also and still are very supportive. I only told a couple of friends at first. I didn't even mention it on FB until the day before he was born. Again, not because I was ashamed. I just didn't want to talk about it. A little denial going on I guess. I had no answers to give people. I didn't want people to feel sorry for us.
I heard a lot of "everything will be okay" and "God doesn't give you what you cannot handle". I know it was supposed to help calm my fears and make me feel better, but it didn't. There were some "Why Me?" feelings going on. Which then made me feel guilty. How dare I think like that?
I don't remember exactly when it happened, but one day I just accepted it. It is what it is. I had begun telling people that if he needed a wheelchair then it was going to be one bad-ass, pimped out wheelchair. And instead of just saying it, I actually meant it. Because, the truth is it didn't matter whether or not he would be able to walk or whether or not he would have learning disabilities or issues with bladder/bowels or whatever....he was still going to be our little boy and we were so blessed to have him.
The fear of the unknown is still there. It probably always will be. But I was determined to not let that ruin the rest of my pregnancy. Because to be honest, Jax may be an only child. The fear comes back into play here. What if we have another child and it happens again? What if Jax requires more attention and the second child doesn't get as much as he should? What if....? I know.....you can't live based on "what ifs". But it's not as easy as you think.
Fast-forward to the present and I can't believe that termination was ever presented as an option. He was meant to live and we were meant to be his parents. To know Jax is not to know him as a kiddo with SB, but as a very cute, happy, healthy social butterfly who loves to snuggle, throw balls and splash in the water. Sure, he has more doctor's appointments than some kids and gets therapy 5 times a week, but he's still Jax. He may not be walking or sitting completely on his own yet, but he's still Jax. He is the best baby that we could've asked for. Reason #2 that he may be an only child: Jason is convinced that because Jackson is such a good baby (easy-going, sleeps through the night, happy 95% of the time) that a second child would be a terror. Whatevs Jason. Some day I'll change your mind. :)
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