Being pregnant with Carver has been a breeze. I barely had any morning sickness (the little I had went away very quickly) and I really didn't even feel pregnant until my belly actually started growing. He has been so peaceful and gentle already.
At about 20 weeks, my OB/GYN sent me to the hospital to have a formal ultrasound performed. They were able to get a better view of the baby and take all of his measurements. Everything looked perfect, but his brain wasn't looking quite right to me. I brushed it off and figured I was examining it too much without any expertise. They told me that the radiologist would get back to us with the results in a few days.
We went to grab something to eat after the visit, and before we could even get our food on the table, my doctor called me. I looked at the phone number on the screen and was a bit shocked. Why would he be calling me already?
I answered the phone. My doctor began to explain to me that the radiologist called him and let him know it looked like the ventricles in his brain were enlarged. Yikes. What does that mean??
He recommended that we go to a maternal/fetal medicine specialist and have a 2nd stage ultrasound performed to get a better look. I was a bit stunned and wasn't sure how serious the prognosis was. I cried when I hung up the phone. Thankfully, my husband was able to comfort me and help me calm down.
As soon as I arrived home, I began to research. I read that enlarged ventricles were pretty common (especially in boys) and that they usually resolve themselves during the pregnancy. I was relieved. Instinctively, I didn't feel there was anything wrong and everything was going to work out fine. I was able to get back to normal and go on with my daily routine.
The specialist was a very busy doctor, and we weren't able to get an appointment for a few weeks. This wasn't too big of a deal to me, although I really wanted to find out right away. I figured it would give Carver plenty of time to get any issues resolved. So I was going to be patient and enjoy the time as best as I could.
My appointment date finally came around on January 31, 2012, at about 25 weeks.
The ultrasound was going as normal, but the sonographer was spending an excessive amount of time looking at his skull and trying every which way to get a "better picture". Her face was calm, and she didn't seem too surprised or anything... so I took that as a good thing. As I watched her scan the brain over and over, I knew there was something wrong. It wasn't symmetrical most of the time she was looking at it. One side was larger than the other. Sometimes, it seemed to be symmetrical, but that was only when she scanned lower in the skull.
I just knew in my heart that it wasn't the way it was supposed to be, but I didn't realize the extent of it.
We sat in the waiting room for the specialist to look over the scans. It was freezing in there and it seemed to take forever. Finally, he opened the door and asked us to come to his office. The look on his face was pretty grim, and I knew this wasn't going to be good.
He brought us to his desk and showed us the scans on his computer screen. He also had other scans of normal brains for comparison. When he pointed things out to me, I was shocked. Nearly the entire left portion of his cerebrum was missing. It was just an empty, black space. He said it was nothing but fluid.
I was shaking. Scared. Crying. I didn't know what to think, and the rest of the visit was a blur. The only thing I left with is a small business card with "Schizencephaly Unilateral" written on the back. We are waiting to go see an pediatric neurologist 1.5 hours away to get a fetal MRI. (Update: the MRI has been scheduled for February 29, 2012)
Needless to say, the past couple days have been a roller coaster. I have been through such a variety of emotions in such a short period of time. So much of it seems like a dream. My eyes are bloodshot from sitting at the computer, researching this extremely rare condition.
Thankfully, not all hope is lost and I have been able to connect with quite a few mothers and groups who have children with Schizencephaly. They are all wonderful, caring people- and I'm so glad the internet has made it possible for me to connect with them.
I have high hopes for Carver. Everything else in his development is absolutely perfect. His heart, organs, arms, legs.... all perfect. He is very active and moves around a lot, and this gives me hope that paralysis may not be a symptom for him. We really won't know much more until we get the MRI.
Until then, we are just staying positive and spending lots of quality time together as a family. Until then, we are carried by all of the support and prayers from family and friends. It means so much to have so many people sending you love!
I'm going to be working on a post about Schizencephaly and what it is. Perhaps that will be a good thing to work on during those times where my mind is racing and I cannot sleep.