you tiptoed into my world.
Only a moment you stayed.
But what an imprint
your footprints have left
upon my heart.
This is the story about our first daughter, Amanda, who we lost January 21, 1995, to a fatal neural tube defect called anencephaly. The part of the neural tube that forms the brain, failed. She did not survive labor and was born still at 1:26am. We were only able to spend an hour with her.
In late August 1994, my husband Rick and I decided that we would start trying to have a baby. We got pregnant on the first try and conceived our baby September 22, 1994. I knew right away. I was so very happy! It was a perfect pregnancy, no morning sickness at all. I was more tired than usual, but that was about it. I loved everything about being pregnant. I told everyone that would listen about the baby. I daydreamed all the time about all the things that I was going to do with the baby. It was all I could ever think about.
I went to my first prenatal visit by myself. I was 9 weeks along. I was very disappointed with the doctor. She did an internal exam, agreed that I was 9 weeks and left before I could ask any questions. I didn't think too much of it, other than she was having a bad day. I scheduled the next appointment when Rick could come with me. I knew we would be able to hear the heartbeat and didn't want him to miss it. It was the most beautiful sound that I had ever heard. It brought tears to my eyes. I never heard anything more perfect. The doctor was the same though. She didn't say much, and when Rick asked her some questions, she turned to me to answer them. I knew right away he was not happy with this. When the visit was over, the next appointment was made with a different doctor. The next four weeks were just as uneventful. We started looking for furniture and bedding for her nursery. We talked about the baby all the time. We were so excited! The day came when it was time to meet the new doctor. She was pretty out there, but she was very warm and caring. She asked me all kinds of questions and noticed some scarring that I had from a laparoscopy. The other doctor never asked anything. I knew right away that I had just found the perfect doctor to bring my baby into this world. I was very comfortable with her. At the end of the visit, she offered me an AFP test. I paid no attention to what it was for and went ahead and took it. I was very naive and didn't even think for a second that anything was wrong. I was 21 and had no clue that bad things could happen and since I made it through the first trimester, it was smooth sailing. A few days after the test, January 17, my doctor called and said that there was a problem with the test I took. She was very calm about it and said not to worry, the test is known for false positives. She said that my due date could be wrong or that there could be twins. She didn't go into what could be wrong. She told me to call the hospital after I got off the phone and make an appointment for an ultrasound. She also said that she wanted me to come in the next morning for another AFP test. I called the hospital and they said that they were expecting my call and to be there in an hour. I thought that was strange. I went to Rick's work to pick him up and we went from there. I started getting excited at the thought of twins. Deep down, I knew there wasn't twins, I wasn't big enough. It was nice to dream though. I knew my due date was right, no question about that. I had no clue that anything was wrong. Once I was on the table, the technician was pretty quiet. He didn't point out much to us, what he did point out, we asked. It was wonderful being able to see what I could of the baby. It was hard to see because of the angle I was at. I asked him a few times to be moved, he didn't listen to me though. We were in there for a long time without him saying anything. He got up and said that he was going to get the radiologist. They came in together after 5 minutes, took more pictures and he left without saying a word to us. I started getting scared at this time. I still didn't know what could be so wrong that they couldn't tell me. On the way out, I asked if there were twins and he said no. I asked him if everything was okay and he said that he couldn't say anything to me. We went home and tried to be normal, still wondering what was going on. The next morning we were getting ready to go have the new AFP done when the phone rang. It was a nurse asking us to come in sooner because a doctor was on her way in to talk to us. I agreed and about fell into Rick's arms crying. I kept asking what was wrong with our baby? He told me to stay positive and that everything would be okay. I know now that he was as scared as I was.
When we arrived at the doctor's office, everyone there was starring at us. This must be pretty bad, I thought. It was very weird, I couldn't stop thinking what could be so bad. We waited about 10 minutes and then were led back to one of the exam rooms. There was a doctor there I had never seen before. We sat down while she was still taking off her coat. She started right away telling us that they found something wrong with the baby. She said that our baby had a condition that was incompatible with life. The baby has something called anencephaly, the neural tube failed to close all the way, making it impossible for the brain to form. The room started spinning with her words.....'Your baby has a condition that is incompatible with life......it has anencephaly.' She was still talking while we were sitting there crying. What was wrong with her? She would not stop talking! I managed to stop crying and try to listen to what she was saying. I was waiting for her to tell us how they could fix our baby. That never happened. My world was crumbling around me. How could this be happening? How could my baby not have a brain? I just felt her kick for the first time the night before the ultrasound. This was just a very bad dream and I wanted to wake up. She said that it was nothing that we did or didn't do, but that a lack of folic acid could have played a role.
to go over our options. She said that if I were to carry the baby
to term, chances are that it wouldn't make it. She also told me that
it could affect any chance of having a future pregnancy. That really
scared me! It wasn't an option as far as she was concerned.
Not being pregnant before, I believed everything that she was saying.
Our choice was to be induced that day, or wait 2 more days until my doctor
would be on call. She wanted a decision right away. We told
her that we would wait for our doctor to be with us. I was in a total
state of shock, and never asked any questions. When we were leaving the
office, there were even more people starring at us. What was wrong
with them? It was very hard to leave that room.
The next two days were very hazy to me. Rick was wonderful and made all the phone calls to tell everyone about the baby. I don't think that I stopped crying. The night before we had to be at the hospital, we figured we better pick a name for the baby. The names that we had been talking about just didn't seem right for this baby. We came across Amanda right away and the name means, 'to be loved.' After we read that, we knew that would be her name. We arrived at the hospital at 7am on January 20, 1995. They put us in a small room across from the nursery. They also put a sign on the door that would let anyone coming in my room know what was going on. At 9am they started the induction and told me that I would start feeling cramps. I didn't realize that they really meant contractions. I finally asked for something for the pain and they gave me Demerol. I spent the next 5 hours sleeping and throwing up every half hour. A nurse came in and suggested getting an epidural. It finally hit me that I was in labor. The anesthesiologist came in and talked to us for a very long time. He tried as best as he could to take our minds off of what was happening. Once the epidural took affect, I felt no more contractions. At 1am I was trying to change my position and felt a strange feeling. We called the nurse right away, who checked and then went to call my doctor right away. I knew my baby was almost here. I was very scared. My doctor arrived about 10 minutes later and checked me too. She told me to get ready to push. I gave two tiny pushes and then Amanda was born still. She was 8 inches long and weighed 5.2 oz. The doctor and nurse held her and looked her over for a few minutes and then gave her to me. She was soooo beautiful. From the top of her forehead down she was perfect. It was very hard to believe that something was wrong. The top of her head was just flat. We covered her up and spent the next hour or so holding her. .
Our lives have changed quite a bit since Amanda left us. Losing her was and is the hardest thing that we have ever done. I don't think that anything will ever compare to the pain of that. Hardly a minute goes by that I don't think of her. She has taught me many things in her short time here. For that I am grateful, but I would much rather have her here with us and her little brothers and sister. She has a very special place in our hearts. She will never be forgotten and will always be my first child.
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