(A note from me: this chapter was the hardest thing I have ever written. I hope I did it justice.)
The Story of Emily
Chapter 4: Devastation
Just shy of 23 weeks gestation, Mark and I went to my regularly scheduled appointment on a Friday. I was happy we would be meeting with Dr. M that day. He was the friendliest doctor in the practice and I liked him the best. He did the routine stuff like measuring fundal height and checking the heartbeat. Dr. M looked at my chart as we were getting ready to leave. He must have noticed I had an ultrasound at 14 weeks, but not one since then because he asked us about it. Most women have an ultrasound between 18-20 weeks. I knew this, but failed to mention it at my last appointment. I was happy just to have the one. I knew if I had another one, I would not resist finding out the gender. I told him all this and that I didn’t really want to have another ultrasound. Dr. M was persistent though, and insisted we needed to have another one.
The sonographer was available right away so Mark and I walked down the hall and into the room I had visited only eight weeks before. In spite of my hesitation at having another ultrasound, I was a little nervous and a lot excited. I couldn’t wait to see our baby again. I began to think how lucky I was to get to see him/her a second time. The sonographer started her work (a tummy one this time!) and almost immediately she picked up on the gender. She asked if we wanted to know what we were having. I looked at Mark and he looked at me and I told her to go ahead and tell us. She typed onto her keyboard, where we could see it on the screen: Baby Girl Ch---. I looked at her and I vividly remember saying, “You’re Joking!”
I couldn’t believe we were having a girl! I said as much to Mark—several times. I spent the rest of the ultrasound in surprised, but happy, disbelief. As the sonographer went about her business, I asked only a few questions. I really thought ultrasounds this far into the pregnancy were to check for gender. We must have spent close to an hour in the room, but it was pleasant to spend so much time looking at our baby. Her heart was in perfect shape and that had been my only concern. Every mother and father looks to that little black and white screen to see their baby’s heart beating. After the sonographer finished her assessment she handed me a towel to clean up while she went to give the report to the doctor. I didn’t think anything of it. I was still riding high on the news we were having a daughter—a daughter I wasn't expecting.
When the sonographer came back to the room, she had one of the midwives, AL, with her. AL asked Mark and I to come to her office to talk about the ultrasound. Since this was my first go-round, I was still completely in the dark. For all I knew, every mom and dad was invited into the office after an ultrasound. Mark and I sat down in the chairs across from the midwife’s desk. I was still smiling with our news (it’s a girl!) until I really looked up and into AL’s face. I could tell she had some bad news to deliver. AL began by telling us they found some abnormalities. I heard only the words: Enlarged. Ventricles. Brain.
For a second, my own brain shut down. I could feel the throbbing of my heart in my head, but I couldn’t think. My mind went somewhere else. Someplace where there was only a blank screen, a place where I was numb. I struggled to come back to the moment so I could hear what else the midwife had to say. But there was a price for staying in the present: unbelievable anguish. Though I tried to hold it together, my whole body began to tremble, and my breath began to hitch. Trails of tears streaked down my face. From deep inside, pressure and pain began to build to a level where I thought I might explode. My chest was hurting; my heart was breaking. I didn’t want to fall apart there in the office. I wanted to run away. I wanted to be away from the kind, pitying face of AL. I wanted to be away from all the happy, expectant mothers I knew were waiting in the waiting room. I wanted to crawl into Mark’s lap, lay my head on his chest and let it all out. I wanted to be away from this pain. I wanted to be safe. Instead, Mark held me as close as possible in chairs side by side and we listened.
AL explained that there are four ventricles in the brain and two of our baby’s were enlarged, one more than the other. These ventricles are areas in the brain through which cerebrospinal fluid circulates. She wouldn’t go into detail of what this meant for our baby, only that it was serious. Wanting to look for any ray of hope, I asked if the ultrasound could be wrong. Her grim expression told me all I needed to know, but what she said was, “Anything is possible.” I latched onto that tiny bit of hope like it was an anchor that would keep me from floating away. In another way, it helped me become numb again for a time.
Mark and I left the building that afternoon different people than we had been when we entered. Personally, I had had one of the best moments of my life and the very worst. We also carried with us two new things. One was an appointment card for a level II ultrasound at the hospital for the very next morning. On the back was written the name of our baby’s condition: ventriculomegaly. The other was a prescription for two sleeping pills. Mark knew how distraught I was so before we walked out, he asked the midwife for something to help me sleep. She hesitated at first until Mark said he was afraid I would stay up all night worrying. Sometimes I wonder if she only gave me two pills because I was pregnant, or because she was afraid I would commit suicide.
I didn’t go to work that day. I simply called them and told them something was wrong with the baby. It was the first time I said the words out loud. Mark called his boss who told him to take the night off and we went home. One of the first things I did was call my mom at work. No matter how old a person gets, in a crisis, they want their mom. Never had I wished so hard that we lived close to one another. For the second time that day, I cried. Not so much for me this time, but because I knew my mom was going to hurt too. This was supposed to be a happy call—a call to say, “It’s a Girl!” Though it was a difficult thing to do, making that phone call helped me feel better. She told me no matter what, the baby would be loved by our family.
Next, Mark called his mom, a former RN, to tell her the news. We were hoping she would have heard of ventriculomegaly. She hadn’t, so we turned to the internet. The information we found was very limited. We didn’t find one single reference to ventriculomegaly. Much has changed over the past nine years, today there are over 56,000 matches. There was no “Dr. Google” or Wikipedia available so we searched for other key words, all to no avail. Exhausted by our long and emotionally draining day, Mark and I got ready for bed. I took out my bottle of sleeping pills. I shook one into my hand and stared at it. Part of me wanted to take it and sink into nothingness. Another part held me back. I was already hollowed out and empty, I didn’t want to be oblivious too. I put the pill back into the bottle and sat it on the nightstand just in case I needed it during the night. We cuddled together that night, comforting each other in a world that had changed so dramatically in such a short amount of time.
The next morning came early. We were supposed to be at the hospital at 7:45 which meant we had to leave the house at 7 o’clock. Mark and I woke up to the worst rain I have ever seen in my life. The sky was still black when we left the house and the rain was coming down in buckets. The creek that ran through our front yard had come out of the banks and was coursing more like a river. Thankfully, the creek hadn’t yet reached the level of our driveway, but it was close. Unfortunately, Mark had parked the Bronco in a lower part of the yard and the creek was up to the running boards on one side. Later, we would learn our town had four inches of rain in an hour.
While the rain was aggravating, it was a good distraction from what was really on our minds that morning. All the way to the hospital, I was still hoping the ultrasound from the day before had been wrong. We arrived in time and went upstairs to the high-risk obstetric unit. Soon we were called back to the radiology room for the level II ultrasound. I thought level II meant different equipment, but I was wrong. What it means is first, a sonographer does a preliminary scan, then a perinatologist comes in to complete it. I didn’t care much for the perinatologist (I don’t remember his name, so I’ll call him Dr. X). He was all business as he used the probe to find Baby Girl’s brain and measure her ventricles. I tried to talk to him several times, but received one word responses. I was looking at this baby I already loved on the screen, and he was treating me like I was wasting his time.
Dr. X finished the ultrasound and told us that Baby Girl did indeed have enlarged ventricles. There was no softening the blow this time, just cold, hard, fact. Before Mark or I had a chance to recover from this information, Dr. X proceeded to tell us that I was beyond the date for termination in North Carolina, but if we wanted to go to Virginia they would do it up until 24 weeks. I couldn’t believe my ears! Here I had just been telling him how concerned and worried we were about this little baby and he was encouraging us to get rid of her like she was a broken toaster. It was then that I realized we were going to have to fight for Baby Girl every step of the way. We were the only ones looking out for her best interest. I told him, very clearly, “You can just skip over that information. We’re not interested.”
Even though Mark and I were both fuming at this point, we needed answers. We asked what the enlarged ventricles meant. He told us that there were many possibilities, but the most likely was hydrocephalus (water on the brain). This word was not foreign to me. I knew from my job what it was like to teach and care for a kid with hydrocephalus. What I didn’t know was what it was like to be a mom to one. We needed to know what the next step was. Dr. X said that we would need to come back for a level II ultrasound every three weeks for the remainder of the pregnancy. He suggested we consider an amniocentesis for the next appointment and he also wanted us to meet with a genetic counselor then. In less than twenty-four hours I went from having a very easy, normal pregnancy to a complicated, high-risk one.
Chapter 5: Life Goes On
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