Everybody remembers their D-Day (Diagnosis Day). It's a day that is permanently etched in your memory forever. Little things may fade in time but you remember those pivotal moments. I want to go back and remember my D-Day. I want to try and remember all the details and all the emotions. So here goes...
It was Dec 15, 2008. I was 22 1/2 weeks pregnant (although we thought I was only 21 1/2 weeks at the time) and it was my midway ultrasound. My appointment was scheduled for 1pm. I had no idea at this point anything was wrong with my baby as I had declined the Quad screening earlier in my pregnancy, which would've detected something wasn't right. I already knew at this point we were expecting a little girl because I found out at 15 weeks. I was excited for my ultrasound. I loved the opportunity to see my baby moving around on the screen.
My friend, Beth, performed my scan. I had my ultrasound done in the Radiology department where I work. My best friend Lindsey, who works in my same area, was with me. Anthony couldn't make it to my appointments because of work so she always went with me for my ultrasounds. Lindsey and I chatted the whole time and were very upbeat. Beth seemed so too at the start of the scan but then seemed to get a little somber. Lindsey and I asked if it was a busy day for them and she implied that it was so we assumed that the mood change was just they were busy and she was tired. I could definitely understand that since I've had those days.
I watched the screen and everything was looking ok. I kept looking back and forth between the screen and Lindsey as we were talking. I saw Beth get measurements of everything except her brain, which I just assumed I had missed when I had my head turned and was talking to Lindsey. I remember seeing Beth scan her head and seeing her orbits. The view I remember seeing was a classic sign for anencephaly. I just didn't know it at the time since I had never seen the condition on an ultrasound.
Beth said she needed to see if the radiologist wanted to scan for himself. You see, we had merged with a new radiologist group not long before that and she said sometimes they like to scan the patient themselves. No big deal. Except it wasn't one of the new doctors reading. It was our old doctor, Dr. H, who reads all of our Nuclear Medicine scans when he's there. Lindsey and I thought Dr. H was on that day but we hadn't seen him yet so we figured maybe he had the day off or something. Beth came back and said that I was all done since the radiologist didn't need to scan me. She printed me off some ultrasound pictures but I didn't get any of her face or head. Beth said it was the position she was in-she couldn't get any good ones. I wasn't surprised by this at all because we always had a hard time getting good pictures of Kyndra's face when I was pregnant with her. She always had her face pointed away from us and up to that point Carleigh was looking like she'd be just as stubborn (and later she continued to be!).
So, I go on with the rest of my shift at work and then leave. I picked up my daughter Kyndra from the sitter's house and go home. No sooner had I walked in the door the phone is ringing. It is Dr. F, my ob. When I saw her name on my caller ID, I knew it couldn't be good. She said they had tried catching me before I left work but had missed me by just a few minutes. (Lindsey had answered the phone at work and told them.) She said there was something concerning on the ultrasound and that she needed me to come into the office as soon as possible. I needed to come in today no matter what time it was. My stomach just sank. This couldn't be good and I was running a hundred different possibilities in my mind. Is it Down Syndrome? What if there's something wrong with her kidneys? What if she doesn't have any kidneys and it's Potter's Syndrome? Is it a heart defect? Is there something wrong with her brain or ventricles? Believe me, there really probably were a hundred different scenarios I ran through my head at what it could be.
I called my husband, Anthony, and told him what I was told over the phone and to see if he wanted to go with me into the office. He called his boss and let him know he had to leave work and then called me back to tell me he would meet me there. I called Dr. F's office back and let them know that I was on my way in. I packed up my things and changed Kyndra's diaper. I was worried. In the meantime, I called Lindsey to see if she had left work yet. She had already left. I was going to have her look up my ultrasound report for me. Lindsey told me to call her as soon as I was done. I promised her I would.
Kyndra and I left the house then to go back to the hospital. I arrived there before Anthony at 3pm. I was antsy. I was nervous. With time on my hands, I went back to my area in Radiology and I looked up my ultrasound report. I skimmed it until I read the word 'anencephalic' near the end of the report. My eyes froze on the screen. I think my heart started to beat faster but it felt like it had stopped. I said out loud, "This can't be happening to me." My coworker Jimmy was still there. He saw that I was upset and he asked me what was wrong. I told him, "My baby doesn't have a brain." There was a pause before I quickly added, "I can't handle this," and I left the room.
I remember thinking in my head "What do I do? What do I do?" I didn't know what to do. I didn't want to even think about what it meant for my baby. Too late....I knew what it meant. I pushed all thoughts away for the moment. I went to the front desk in Radiology and gave Kyndra to the girls up there to watch for me while I used the restroom. After I was finished (which didn't take long enough), I got Kyndra and made my way to Dr. F's office to meet Anthony. I wasn't really freaking out at this point. Just stunned. I tried to come up with a reason in my head that what I read was wrong. Maybe I just misread it. I knew deep down though that it was true. I needed to hear it from my doctor though. I didn't tell Anthony what I knew. I didn't want to crush his world on the very slim chance that I had gotten it all wrong. I kept myself together well.
It didn't take them long in the office to take us back. There were still a few patients in the office. They took my vitals. My systolic blood pressure was 115, which is elevated for me. My systolic usually runs 80-90. My pulse was high, too, but I already knew that. I could feel my heart beating in my chest. They took us back to a room and we waited. The office gals watched Kyndra for us in the meantime. I think Dr. F waited until all her patients were gone to come in. Waiting in the room was horrendous. I was basically waiting for affirmation of my baby's death sentence.
I was sitting on the exam table and Anthony was in the chair in the room. She came in finally and said her hello. She didn't waste any time in getting right to the point, which was fine with me. No sense beating around the bush. I don't remember her exact words but she mentioned that there was something of concern on the ultrasound and it showed that our baby had anencephaly. Yep, there it was-my worst fear confirmed. This was the exact moment it all came crashing down. My hands went to my face and I started crying. I remember thinking in my head, "How can this be happening to me? This isn't supposed to happen!"
Dr. F asked me if I knew what it was. I told her I knew but she could explain it to Anthony, so she did. Of course, I added in my 2 cents of knowledge like I always seem to do. She explained what the diagnosis meant for our little girl. She was missing most of her brain and her skull. She wouldn't live more than a few minutes or hours if she was even born alive at all. Next, Dr. F told us our options. We could continue with the pregnancy or choose to go ahead and induce. My decision had been made long ago before Carleigh was even conceived and I wasn't changing my mind. I was going to carry her to term. I told Dr. F through my tears, "I'm not terminating. I'm not doing it. I'm carrying her to term." And that was that.
With all the emotions I was feeling, the only one that surprised me was my acceptance of the situation. Wasn't I supposed to be more upset? Wasn't I supposed to be angry at God? That really didn't seem to be the case. Instead, I felt a peace about the whole situation. I just knew everything was going to be ok even though I was hurting for my little girl. I believe that came from Him.
Dr. F told us what the next step was going to be. She was going to refer us to a Maternal Fetal Specialist to just get a second opinion and to see a genetics counselor. The office would call me tomorrow with my appointment time. I had never been to this type of specialist before so I was a little unsure of what to expect. (Looking back, it was a BIG waste of time and I'll
never do it again.) She assured me that Carleigh having anencephaly probably happened for no reason at all. Just a random thing since I was on enough folic acid and we have no family history of neural tube defects. That could very well be true but I didn't care at that point. I just didn't want it to be real.
Dr. F then asked us if we wanted to speak with Dr. H and go over the ultrasound with him. It wasn't yet 5pm so I knew that he would still be in the department so I said yes. I had to see it on the ultrasound for myself. Dr. F left the room and gave Anthony and I a few minutes alone before we would go see Dr. H. We just held each other. I reassured Anthony that everything would be ok and that God would get us through this. We cried in each other's arms and then we pulled ourselves together and left the room. We said goodbye to Dr. F and the office staff and went to see Dr. H.
We stopped by the front office in Radiology first and Cheryl, one of the girls who works up front, watched Kyndra while we went around the corner to talk to Dr. H. I knocked on his door and we went in. He knew why we were there without having to ask and he said he was sorry for us. We thanked him. I sat down in the extra chair in the room and Anthony stood beside me. Dr. H went over the ultrasound with us and showed us the several views of her anencephaly. He pointed out where there was nothing above her eyelids. He then showed us what a normal ultrasound looked like, which I already knew but figured it would be helpful for Anthony.
Dr. H said he didn't know how Beth could get through the ultrasound so stone-faced and then at that moment Beth came in and she just had this look on her face that said it all. We hugged and just held each other for a few minutes. She said that if I needed anything to let her know. I told her I'd probably be back at some point to get some ultrasound pics of Carleigh. I told Carla, one of our lead techs, who came by at that point that I wasn't coming to work the rest of the week and she told me to take as long as I needed. They all supported our decision to continue our pregnancy with Carleigh and were proud of us.
I called Lindsey after I got Kyndra back to tell her what we had found out and what was going on and also to ask her if she could drive me home. I just didn't feel like driving at all. Lindsey and Jarrod, her husband, got to the hospital and Lindsey and I hugged. I'm so glad she came because I really needed a friend at that moment. We hung around the front desk area in the department for a little bit before I called my mom and told her the news. At first she didn't believe me but then it sank in to her that I was serious. I told her to tell everyone else because I was not up to calling everyone. She said she would. We also planned for her to come down and stay the rest of the week with us before we left for our vacation to Hawaii. It was a short phone call. Finally, I decided it was time for us to go home. I had a hard time leaving.
Lindsey drove me home in the van and Jarrod followed so he could take Lindsey home. Anthony drove his car back. I didn't talk a whole lot on the way home. I was still trying to digest all of what happened in such a short period of time. Plus, I just didn't know what to say. How could there be any words to describe what I was feeling? To express the pain in my heart? I just let the tears fill my eyes.
We got home and Lindsey and Jarrod stayed for a little bit and then left. I think we ate some pizza. I got online and wrote a journal on Cafemom and Myspace for all my friends letting them know of the news. It wasn't long and I went to bed. I felt exhausted. The events of the day played over and over in my head. The ultrasound. The phone call. The diagnosis. The devastation.
It wasn't supposed to be like this, and yet, it was.
I knew my God was going to do big things with Carleigh's little life. I never imagined how big an impact she would have on mine.
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