Our journey started twenty weeks ago, when we first found out we were expecting. We were thrilled, and terrified at the same time. FIVE children!? We will be completely outnumbered! We will lose every battle, not to mention ever dollar we make which will go towards diapers, food, clothes, sports, education... yikes! But we would make it work. In the months following our announcement, we had a whirlwind of feelings. We fought, we loved, we wavered, we planned, we almost broke. Three weeks ago, our dear friend gave me a wonderful birthday gift: an elective ultrasound to determine the gender of our sweet little baby! We were absolutely on cloud nine when we discovered she was a girl. We have four boys, collaboratively, and a little girl would complete our family. The next three weeks were spent buying bits of clothes and accessories, mostly in the spirit of our favorite sports team, the University of Oregon Ducks. We began to plan a baby shower, thought of names (well, argued about names... you know us), talked about how she would never date because she'd had four big brothers fending off the boys. She would be our princess. Two days ago, on October 8th, we discovered she would also be our angel.
Monday morning, we woke up early to attend our twenty week ultrasound. The tech measured her perfect little legs, her perfect little arms and belly, and we saw her kicking her big feet (which she obviously inherited from her Mama). Toward the end, she measured her head, but stated that she was unable to get a good measurement because of the position she was in. The ultrasound lasted an hour and fifteen minutes. We waiting for my doctor to come in and give us all the results we were expecting: your baby is perfect, everything is on track, and you're halfway there! Forty minutes went by in that waiting room. Forty minutes was very uncharacteristic of my doctor, who was normally quite prompt. When she finally knocked on the door, the look on her face told me something wasn't quite right. She sat down and looked at us and what came out of her mouth next shattered our world. "I have some horrible news to give you that I've only had to deliver to one other family in all my years of practice. Your baby has a neural tube defect called Anencephaly that is not going to allow her to live". Will immediately stood up and wrapped his arms around me as I cried and cried. This was unreal. I didn't want to believe it. I asked if she was sure. I asked if it was something I did wrong. She assured me that this defect simply just occurs and not for any reason. It happens very early on in gestation (26-28 days), and nothing I could have done would have avoided it. My heart was in pieces. With no strength to ask any more questions, she showed us out the back way and sent us home to process. She told me she would call later that afternoon and we could continue to talk.
The drive home was agonizing. Never in a million years did we expect to hear something like this. Until that morning, we planned to bring a beautiful little girl home with us in February. I climbed into bed and continued to cry as Will held me, and we stayed that way for a few hours. Being the information girl that I am, I had to Google this condition and learn as much as I could about it in order to understand. A few things I learned are these (for those curious about what we will be facing):
- Anencephaly has a .001% chance of occurrence, or 1 in 10,000 babies.
- Stress, smoking, food choices, trauma like a fall or car accident, are absolutely not connected to this abnormality. It just happens with no real rhyme or reason.
- At 26-28 days gestation, the the neural tube of a normally developing fetus will close and allow the brain and skull to form. In an anencephalic baby, this tube never closes. A brain stem develops, which allows for reflexes and movement, but the frontal lobe of the brain, which controls thoughts, feelings and actually brain activity fails to form.
- Aside from the brain, the bodies of anencephalic babies are perfect. Ten fingers, ten toes, beautiful and strong beating hearts.
- There is virtually no chance of survival after birth. At a maximum, an anencephalic baby will live for a day or two, but most are born still or will live for just a few minutes to hours.
We will spend the coming weeks deciding the best time to bring our little girl into the world, hold her as long as we can, and make sure she is placed in the arms of God with as much love in her little heart as possible. I've found many blogs by parents of Anen Babies, and they have been comforting to me. I hope as my story continues to develop, I can be an advocate for parents down the road who will be faced with this heart wrenching and life changing obstacle. Please feel free to follow our journey here as we walk down this road. I will update this blog with my feelings, new information, and try to answer any questions people who come across it may have.
We want to thank everyone for their love during this time. We will surely need it, and graciously accept it. Please hold us and our precious baby in your thoughts and prayers.
Emilee and Will