Nathan and I had been counting down the days to our appointment, inexplicably excited to find out if we would be having a little boy or girl. I scheduled the appointment for first thing on Monday morning, 7:45am. During our ultrasound, we saw the beating heart of our child, moving arms and legs, two perfect kidneys, a stomach – it was equally beautiful and exciting. The ultrasound tech was explaining everything on the screen, and all of the sudden “it’s a girl!” appeared on the screen. Our baby was a girl – little Ayden Nicole. We had had names picked out for several months already. A little tear slid down my cheek as I realized I was having a daughter. Nathan’s hand tightened around mind, and both of us were excited beyond belief. I really can’t even explain how much joy we had as we left the ultrasound with a string of pictures. We had a follow-up appointment shortly after the ultrasound, and we sat in the waiting room texting all of our friends and family to let them know we were having a baby girl. We sat there for an hour and a half, not even bothered by the long wait, planning all the things we would do with our daughter when she was born. We sat there loving every response from family and friends – our sister in law had just found out she was having a boy. The thought of a little girl and a little boy running around at family functions was just too exciting to even handle. So much joy.
Eventually we got called for our appointment, where we sat and waiting for a little while longer in the tiny exam room. We were officially running late for a small breakfast get together with Nathan’s family, where everyone was waiting to hear if we were having a boy or a girl. Dr. Calvert eventually entered the room, followed by one of the midwives. As she walked in, she said “so you found out you are having a girl?” We responded excitedly, not at all expecting the words that were about to come out of her mouth. “I’m afraid I have some really bad news about your baby girl.” Nathan was instantly standing by my side, arms wrapped around me, as Dr. Calvert proceeded to tell us our baby’s brain and skull had not formed. I just remember absolute confusion. I had just seen her on the screen. Her heart was beating, her arms were moving. I had seen her little face. She was alive and well. I didn’t understand that something could be wrong with my precious daughter. Dr. Calvert went on to explain that the neural tube defect was not compatible with life. This confused me even more. Her heart was beating. I’d just seen it. I remember asking what this meant from here on out, and she explained that the baby would likely make it full term if that is the option we chose. She laid out three options for us – going full term, inducing labor now, or going to Seattle for a surgery that I wanted to hear nothing about. She and the midwife gave us a few moments alone, how long, I have no idea. I just remember sobbing into Nathan until we heard a knock on the door and they came back in. They asked if we had any questions. I couldn’t speak, let alone think of what to ask. They offered to show us pictures of Anencephalic babies, so we could understand the circumstances a little better. They warned us they were fairly graphic, but we decided we wanted to see what was happening to our daughter. The pictures were graphic. Trying to wrap my mind around the thought of our little girl being anything but perfect was impossible. Dr. Calvert was very kind as she explained as much as she could, and suggested coming back in a few days when we had time to process things a little more. She scheduled an appointment for two days later, during a time she normally wouldn’t see patients, but would make an exception for us. Because she scheduled the appointment for us right there, we didn’t have to stop at the front desk on our way out, and were able to escape out a side door and go directly to our car without having to see anyone. We sat in the car and sobbed. How can you go from the happiest moment in your life, to the most devastating moment of your life, in a matter of seconds? How do you start to process the fact that your child isn’t going to survive?
Even as I’m writing this, one month after we found out the news, I can feel Ayden stirring inside me. She has been kicking more today than I’ve ever felt her kick. Nathan put his head on my belly, and could hear her heart beating.
“I’m afraid I have some really bad news about your baby girl.”
I still hear those words run through my head at least once an hour, without fail. I still have a hard time understanding what they mean. I’m still going to carry her to term, I’m still going to give birth. I’m just not going to be able to raise my baby girl like I had been dreaming I would.
It’s really impossible to describe the pain of losing a child. To be honest, I still don’t know what that pain is like, because we haven’t lost her yet. We still have her. But the pain of knowing we are going to lose her is far greater than anything I’ve ever experienced, could have imagined, or would ever wish on my greatest enemy. How do you recover from this?
As Nathan and I sat in the car, after hearing the most devastating news of our life, we began to realize we were going to have to eventually leave the parking lot. Nathan started driving, and pulled into a gas station. He asked me if I wanted to go home, or go somewhere. I told him I didn’t want to go home. He pumped the gas, got back in the car, and I suggested we drive to the beach. He had been thinking the same thing. We started driving towards Ocean Shores. The drive was fairly silent. We didn’t know what to say. I’d occasionally look out the window as tears streamed down my face, completely unable to even think. I remember praying a lot. I prayed that Nathan and I would see eye to eye on every decision. I remember telling God I didn’t understand, but that I trusted Him. I remember not being angry, just hurting beyond belief, and confused. At some point we texted Nathan’s mom to let her know we couldn’t make it to breakfast because of our news at our ultrasound. Telling her made it more real, and made it more painful. I cried on and off all the way to the beach. I just remember Nathan telling me, “you just have to keep talking to me, okay?” He didn’t mean right at that moment. He meant through everything we were going to have to go through from that moment on. I needed to keep talking to him, to not shut him out. I promised.
We parked at the beach in a place we could see the ocean. It wasn’t raining, but it was cold, and it was windy. We sat in the car staring at the waves, and eventually got out and walked to the water. We didn’t stay out there for long. It was very, very cold, the wind pierced every layer of clothing. We walked quickly back to the car and continued to sit. Nathan asked me if I had any thoughts of what I wanted to do, out of our three options with Ayden. I tearfully explained that as long as she is alive and well, it is not my decision to decide when her heart stops beating. As soon as I had heard the three options laid out by Dr. Calvert, I knew I would carry her as long as she would let me. Not all anencephalic babies make it full term. If Ayden made it full term, I would carry her full term. To end her life would not be my decision. That just isn’t something I could ever live with. Nathan said he would be with me 100%, with whatever I decided to do. And that is what we decided – we would continue to take care of her as long as she was with us.
Eventually we both started googling Anencephaly; we hadn’t really heard much of what Dr. Calvert had said to us, and we knew nothing about it. We hadn’t even heard about it before we were told our daughter had it. We assumed it was very, very rare. It isn’t.
One in one thousand babies are anencephalic, 0.1%.
Most anencephalic babies that survive delivery only live a few moments, to a few hours.
Many parents choose not to continue the pregnancy.
The information was overwhelming, and much of it was coming from random places on the internet. What could we believe? What was true? According to most sources, 35-55% of anencephalic babies don’t survive delivery, but that is a huge range – what was the real number?
We realized we had to tell friends and family what was going on. We had just told almost everyone we knew that we were having a baby girl – they all assumed everything was fine and that she was healthy, like all the other babies your friends have. We typed up a text, explaining what we had found out, and began sending it out. We cried every time we sent a text. More real. More painful.
The responses slowly started coming in. My mom was heartbroken with us. Our siblings were devastated for us. Everyone said they would help in any way they could. Everyone was praying for us, and for Ayden. Every response brought more tears. The love and care of everyone was very apparent. No one knew what to do, and we didn’t know what we wanted anyone to do. Eventually, we started driving home. We stopped in Olympia and got Herfy Burgers and ate them in the car. Neither of us wanted to eat, but we knew we should. I knew I still needed to eat for Ayden. And if it took all I had in me, I would keep eating to keep her as happy and healthy as possible for as long as I possibly could.
My siblings are amazing. They all wanted to bring us food that night. We didn’t want to be around a lot of people, but we asked Nathan’s brother Jordan and his wife Emily to come over, and my sister Shandeigh and her husband Jake. Jake and Shandeigh brought pizza and Jordan and Emily brought home made chicken soup. Shandeigh brought me flowers and a giant, pink fuzzy blanket with ridiculous hearts all over it. Just the look on her face when she came through the door told me she was so devastated by what we had found out about her niece. They share the same middle name, Nicole. When we told her months before what names we had picked out, she cried when she heard Ayden Nicole. We had joked that we were scared to tell her if we found out we were having a boy, because she was so excited about the prospect of a niece that shared her name. And how she was getting a niece, and losing a niece at the same time. Shandeigh and I went and sat on the couch and cried in each others arms for a significant amount of time. My sister and I didn’t always get along growing up. Okay, we hated each other for a significant portion of our upbringing. We still didn’t always get along even as adults. But when I found out I was pregnant, something changed. And when we found out the horrible news about Ayden, something changed again. I can’t even describe it, really, but it was like she was feeling the devastation I was feeling, while being able to put aside her hurt and just be there for me. It was a while before I would realize how significant this was, and how much I would need this throughout the time to come.
I don’t remember a lot else about that night. Eventually everyone left, and it was just Nathan and I again. My little sister Rebekah lives with us, but she was on a work trip in Alaska for the week, so we had the house to ourselves. I remember Nathan and I sitting on the couch and crying after everyone left, and eventually we went to bed.
That was the first of many sleepless nights.