It's a boy, I'll tell you now. He didn't bother hiding a thing from me, so I won't hide anything from you, either. A sweet little baby boy.
But there was this unusual sack behind his head.
And then I heard this word: Encephalocele.
I was angry and terrified. Crushed. You've got to be freaking kidding me. No. Not possible. Not after everything we went through losing Sarah. No. No. NO!
But all the no's in the world won't make it go away. My baby Liam has an encephalocele. This is really bad.
I held my bestie Sonya's hand. We're due just a few weeks apart, and I think she cried as much as I did. Part of me started to freak out, while another part of me refused to believe. I felt bad for the poor med student who came to watch. I had teased him earlier about making sure he'd paid attention in A&P. He thought he was just going to see a nice little routine ultrasound. Instead he got to see a relatively rare neural tube defect that affects 1-4 in 10,000 births. And he got to see what happens when a mother gets news she wasn't even remotely expecting to hear.
It seems that his anatomy besides the encephalocele is perfect. His organs are all where they're supposed to be and he does not have fluid on the brain. Still, the Perinatologist didn't sound encouraging. I asked for an amniocentesis, which is what she was about to recommend. They did it right then and there. After the needle went in (which hurt!) I could see Liam on the ultrasound, trying to reach the tube. It seemed like he was excited that there was a toy in there to play with (glad someone was). I can only imagine what he finds to amuse himself when I can't see.
We met with a councilor afterward who said a lot, half of which I can't remember. I think that's just what shock does. It also makes me hungry apparently, because I couldn't get lunch fast enough. Actually, I couldn't get out of that office fast enough.
They called me during lunch to tell me I was scheduled for a fetal MRI the next day. I cried. A lot. I tried to explain to the kids, but how do you make them understand something that you can't wrap your own brain around? And of course, I spent a lot of time with Dr. Google, who is a pain in the ass when it comes to this diagnosis. While he can bring a ton of resources to your fingertips in an instant, he kept greeting me with things like:
The presence of an encephalocele is associated with an increased incidence of death in utero. It is estimated that only half survive to birth.
Those located in the front, have a 100 percent survival rate, while those located in the back have a 55 percent survival rate. In the United States the most common type of encephalocele is in the back, while in Southeast Asia a frontal type is more common. Approximately 13 to 44 percent of these babies have a chromosomal abnormality and approximately 75 percent of babies who survive will have some degree of mental deficit.Did I mention that I cried a lot? But then, I found a story of a woman who's baby was born with this, and is okay. Suddenly there was a light. There was hope! Liam kicked me as he'd been doing all day, and I sent an e-mail to the blogger. Hope is a powerful thing and I had to say thank you.