I was under the illusion that our journey to BB had taken a turn for the normal. A naturally conceived child and a normal (other than my already known fertility issues) pregnancy. That all changed on Friday, May 24th.
I was directed to go to a perinatal doctor by my OB but wasn't told why. I went to the appointment by myself because Mike was preparing to drive to Ohio and I wanted to allow him time to sleep before his long drive.
I checked in and was eventually called back for the sonogram. The tech did a full assessment. She took pictures of everything, organs, structures, blood flow, etc. I asked lots of questions about what we were looking at. I like seeing all her details and think anatomy is cool. So it's always interesting to me to view the sonograms. She did explain some things as I asked but when i asked, she told me she wasn't allowed to say anything if she saw something that wasn't normal. The tech then left the room saying she was going to check her list and would be back to try and get a profile picture of her face since she wasn't able to get one with B.B. dancing around.
I sat in the room, sonogram gel still on my belly and waited. When the door opened again it wasn't the sonogram tech but the doctor. I was a little taken aback. I didn't expect anyone else to come in. He introduced himself and told me he had good news and bad news. He explained that most everything looked perfect but that her skull had an issue. He said that she had what's called a frontal encephalocele and began to explain that when the skull forms there are three pieces that come together to form the forehead and hers didn't completely come together causing brain matter to seep out. At this point I'm of course crying and he asks if there's anyone I can call. I said yes and called Mike. When he answered the phone I told him that I needed him to come to the doctor's office. I thought it was coherent but apparently it sounded a little like babble. The doctor said let me talk to him and I handed him the phone. He told mike that our baby had a hole in her skull and had brain matter leaking from it (which put crazy images of brain matter just continuously leaking out of her skull into his head) and pretty much handed the phone back to me. I asked where he was and how quickly he could get there and he said he was on his way. It took him 45 minutes to get to the office.
After hanging up with Mike the doctor asked if he should wait to explain more until Mike arrived but having only half the information was worse than having all of it. I said no, that I wanted him to continue. He finished explaining that her skull hadn't fused at the forehead and that there was brain matter that had seeped through the hole and was sitting on her forehead. Once he finished his explanation, I asked what we did now. They told me all they could offer was pregnancy termination. They then escorted me to an empty office to wait for Mike to arrive. While I waited, I googled, I looked at the copied page from a medical book the doctor had given me, I cried. I didn't know what to think. All I could think was will she survive, how could this have happened, I would never terminate this pregnancy.
After what seemed like forever there was a knock on the door and a nurse let Mike in. We hugged and cried. I apologized for him having me as his wife because I'm obviously broken in every way, which he promptly stifled and said he wasn't sorry at all. I tried to give the best relay of information that I could. But there was quickly another knock on the door and we were escorted back to ultrasound room. The doctor ran through the sonogram images as he explained what everything was. We asked questions like what can we do? What's her prognosis? What do we expect? But we didn't really get a lot of answers. I asked if she lived til birth what was her prognosis but was cut off half way through and he did affirm that she would live til birth but said only as she grew would we know her mental capacity. He continually told us to prepare for her to be in a vegetative state and that because of the brain matter that was in the encephalocele was disorganized that the brain matter behind it in her skull would be disorganized. We were once again told our only option was pregnancy termination. At this point I honestly considered it. Then we were told if we wanted to do the pregnancy termination I was at the end of the time frame where termination was allowed in this area. He noted it was a fairly safe procedure but that it hadn't been done frequently on unicornuate uterus, and I noted, because they're rare. It seems to be a trend in my health history.
They gave us a minute and we hugged each other and cried some more. I don't think I ever truly knew what the words 'and they wept' meant until this moment. We wept. We eventually told them we just needed the weekend to process all this information. So we left there, followed each other in our separate cars home. Mike called his dad to let him know he wouldn't be making the drive to Ohio this weekend.
When we got home Mike and I talked. I was horribly scared of not being able to care for a child in a vegetative state and of this stress tearing our relationship apart. But we both agreed that when the doctor said they would stop her heart to do the pregnancy termination we both just couldn't fathom agreeing to that. Faith had gotten us this far (I hadn't even expected that I would be able to get pregnant after trying for so long) so why would we turn our backs on whatever God had planned for us and our daughter. We knew it wasn't our decision to make. Whoever our daughter was to be is who she was to be and we were not going to stand in the way of that.
The rest of the weekend is a little bit of a blur, but I do remember waking up at 5am crying. I thought I was being quiet as to let my husband sleep but he heard me and just rolled over and held me as I cried. Scared for the future, unsure of what all this meant.
We spent the rest of the weekend resting, researching, and explaining to people. My sisters came over for memorial day. It was good to be around family.
In the end, I knew that if Mike and I were in it together that we could take on any challenge.
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