The Game Changer

Our 12 week appointment came so quickly. I had been having dreams about getting to see our babies (ah!) again and I really hoped that we could have another ultrasound, but I wasn’t sure how frequently we would be getting ultrasounds. When we first got to the appointment, we were taken back into the room and had a normal office visit. Before the doctor came in, we were told that they were going to do an ultrasound after all, just to make sure that both babies heartbeats were seen since using a Doppler to hear can be a little tricky with two babies. (They wanted to make sure they heard both of them distinctly and weren’t just hearing one heartbeat two separate times). We were so excited to get to see our little peanuts again!

We went in for the ultrasound and there was a student there doing the ultrasound and our regular sonographer also. The ultrasound began and it was incredible! They had grown so much! We could actually see legs and arms and heads and heartbeats. They looked more like little humans and were wiggling like crazy! Chase and I fell in love with our little wiggle worms and could've stared at that screen all day.

The student asked the sonographer to take over because she was having a hard time looking at one of the twins. The sonographer stepped in and they did some more scans. We didn’t think anything of it, because we were just so overjoyed watching them both move.

We went back into the room and waited for my doctor to come in. When she did, we talked about things as usual and I asked a couple of questions about some aches and pains (which are just a lovely, normal part of pregnancy). At the very end of the appointment, she told Chase and I that she wanted us to see a specialist because they couldn’t get a good view of Baby A and that he/she was measuring about a week and a half behind Baby B. She was a little concerned because with our twins being fraternal and each having their own placenta, there shouldn’t be any risk of one twin taking more nutrients than the other, especially not this early in pregnancy.

We were instantly terrified. Our brains went through worst case scenarios faster than anything else and we shared with our families that we were nervous and scared and weren’t sure what was going on. We were reassured by our friends and family that everything was going to be ok and that it would be a good thing going to the perinatologist because they had better equipment.

That weekend waiting was one of the longest waiting periods of my life. We got a call that they would be able to see us the following Monday (only four days after our appointment at my regular doctor). That also scared me. What was so serious that they were able to get us in that quickly? What would we find out?

I prayed so hard that weekend that everything would be ok, but I had a horrible feeling in my stomach that something was wrong. I kept staring at my ultrasound pictures and wondering what could be wrong. I did probably one of the worst things you can do when you’re worried about something, especially a medical something, I googled it. I looked at pictures of other ultrasounds with babies who had Down’s syndrome, Trisomy 18, and all other kinds of chromosomal disorders and genetic disorders, and came across something that I prayed it wasn’t – anencephaly.

We went to the appointment at Savannah Perinatology that following Monday. My heartbeat was racing, but I tried to stay positive and pray that everything would be alright. We went back for the ultrasound and my eyes were again glued to the screen, but this time, it was for a different reason. I was looking for little baby A’s head. I knew everything was ok with him/her and I wanted to see. She started with Baby B and showed us his head and heartbeat and limbs (everything looked perfect), then moved on to Baby A. As soon as she shifted over, I could tell that he was a lot smaller. Then I saw his head. It didn’t look like Baby B’s. It was really odd, but the only way I can describe what I saw was that it looked like roots or branches coming from his head. Where there was supposed to be a nice, thick white line showing his skull, there was nothing but the branch looking things. Chase and I immediately started tearing up and trying to choke back the tears. That’s when the sonographer said, “I’m so sorry. I’m not supposed to tell you this, but I can’t just watch you knowing what I see.” She showed us the difference in both of their skulls, then told us that the doctor would be in shortly to see us.

We waited and cried, and cried some more. We still didn’t know what was happening or why it was happening. What did all of this mean? Was our baby going to live? Was it something that I did that made this happen? Why did this happen? Could it be fixed?

The doctor came in to see us. He sat down in his stool and told us that unfortunately, the ultrasounds were showing that Baby A had a condition called anencephaly. I immediately broke down into sobs while Chase was asking what anencephaly was. I told him that it was a fatal condition. We lost it.

To me, everything the doctor said after that felt like knives being stuck into a numb person. I couldn’t believe that this was happening to us. To our perfect babies.

He explained that anencephaly is a rare neural tube defect in which the neural tube (the tube that the head and body grows from) failed to close completely at the top. He explained that this happened about 25 days after conception, before we even knew that we were pregnant. There was nothing that we did that caused this, and unfortunately nothing that we could do to fix it either. The skull of baby A would not form or grow and what looked like the tree branches were parts of his/her brain. Our baby, if he/she grew to full term, would most likely not survive childbirth, and if he/she did, we would most likely have minutes, maybe hours with him/her. 

We talked with a genetic counselor and more with the doctor then, but I hardly remember most of it. All I knew was that everything was different. All of the excitement and joy I had experienced was suddenly tainted. I wondered what the rest of the pregnancy would be like, if Baby A would make it to our next appointment, or if we would get to find out the gender, or if he/she would make it to birth. I wondered how we would tell our family and friends, and how we would tell the rest of the world. How, if baby A made it to birth, how I would be able to bury my baby. How could we even afford a burial? Would we always be thinking of this baby when we looked at his/her brother or sister? How would we get through this?

I had so many questions. Many of them now have answers, but sadly some just don't. I'd like to tell you that everything is fine now and that the diagnosis was a mistake, but it wasn't. I will tell you that although finding out about Alex's condition was devastating, we haven't lost our faith. In the posts to come I will be sharing more about my growing faith and how this pivotal circumstance has challenged me in ways that I never thought possible. I won't be sharing things from Chase's perspective because that is his own story to tell. We would just ask that you pray for Alex's healing, but also that our family would have peace with whatever is in God's will. We don't want attention or recognition (especially in the form of a facebook group), but would love if you shared our story so that others could pray and in the hopes that our story might touch someone else going through something similar. Thank you.

- Courtney