Saturday, July 24, 2010

Mom to Genesis
Stillborn on March 16th, 2007
Lost to Anencephaly
Los Angeles, CA

It was late 2006 and my husband and I had been married a little over 2 years and we finally decided it was time to start a family. We had no idea how long it would take to get pregnant but we thought that it would probably take a few months. To our surprise we got pregnant on the first try. I found out Thanksgiving Day 2006 that we were expecting our first bundle of joy! I was so shocked when I saw that positive pregnancy test that my hands were shaking and I remember glancing at myself in the bathroom mirror and my jaw was on the floor and I was pale as a ghost. But I was so incredibly happy.

We were so excited we just had to share with my family, who live next door, and they threw an instant party for us. My mom rushed to the store to get a cake before they closed. It read "Congratulations!" on it. She also brought home with her a little yellow bib with stars on it and it said "Daddy's little star" on it. We had sparkling apple cider (of course!) with strawberries. We took photos of the celebration as well. It we the beginning of the best chapter of our lives.

As the weeks went on I was able to have two ultrasound visits with my little one and the doctor was able to print out some pictures for me. Pictures that I will treasure the rest of my life. I remember my mom came with me to my appointment, not only because I was nervous since I had no idea what to expect, but also because this was her first grandchild and she loved seeing the baby when she could. During the second ultrasound I remember my mom was so happy to see that little bean jumping around in there moving around its little arms and legs. She started to cry from the joy. That ultrasound video is burned in my brain to this day, I'll never forget my baby waiving hello to me.

I was into the second trimester and was itching to buy stuff for the baby already. I went and bought all neutral colored baby clothes because we still didn't know what gender the baby was. Though in my heart I felt it was a girl. Around 18 weeks the time came to do the AFP test. My husband told me I should decline the test since we were young (23 & 24) and there was no history of any illness or anything in either of our families. I knew he was right but something told me to do the test anyway. I went to the lab and they took my blood. As I was sitting in the waiting room I was feeling very confident that this was just going to be a routine testing and they were going to tell me everything was great just as they had so far through my pregnancy. The lady who took my blood was having a casual conversation with me:

Her: How far along are you?
Me: About 18 weeks
Her: Is this your first?
Me: Yes.
Her: You know, no matter the outcome of this test, you are blessed to have this baby.

I was a little surprised that she said that last statement to me. I just smiled and nodded and after she took my blood I went on with my day. I had no idea what she may be referring to. But perhaps I should have paid more attention to this indirect warning as it turned out to be a sign of things to come.

A week later I got a call from my doctor telling me that the results were positive for the AFP test. I asked what this meant. She went on to explain to me about spina bifida and the possibilities that was the problem. She also told me that it could be something or nothing. But she wanted me to go to a specialist that could do a 4d ultrasound to either confirm a problem or put me in the clear. There were no available appointments for 2 weeks. So for the next two weeks I carried a heavy heart thinking my child was very ill, but that I could do it and no matter what I would not terminate my baby.

Finally the big day of my appointment arrived and both my mother and my husband came to this appointment. I was incredibly nervous. I remember sitting in the waiting room full of pregnant women just wondering about the possibilities of what could happen. I sat there and watched pregnant women get called in before me... all of them. Even the ones that came in after me. They saved me for last. I was scared about this. Terrified actually. They finally called my name and I had to have a chat with a genetic counselor first. She went over family history on both my side and my husbands side of the family and I don't really recall what else she talked about. I do remember the last sentence that she spoke though, "Don't be surprised of the demise of your baby." That one sentence changed everything for me. Demise? You mean my baby could actually die? Or already be dead? I only thought that the baby may be sick. This almost put me in a panic attack. They finally had me go into the ultrasound room and the specialist came in. I tried to get my mind off things and asked him if we could find out what we were having since I was well into my 20th week. He said yes and that gave me something to look forward to. As soon as he put the ultrasound machine on my belly I saw my baby and I saw the heartbeat and I saw the baby move. I was relieved my baby was fine. Or so I thought. He scanned for a few minutes and was quiet the whole time. Finally he put the ultrasound machine down and said, "Did your OB talk to you about Anencephaly?" I had never heard that term before and I said no. He went on to explain it to me. The sentence that stood out to me the most was, "the baby developed without a brain." At that very moment he didn't need to say anymore. I knew that you can't live without a brain. I knew it was the worst news I could get and I started crying. My mom and husband didn't quite get it yet. Then came the horrible phrase those doctors keep saying. "It's a condition that is not compatible with life." Then silence. My mom started crying and hugging me saying "I'm sorry. I'm sorry. I'm sorry..." over and over again to me. I think my husband was in a state of shock because he wasn't saying anything. He wasn't doing anything. Not crying. Nothing. Just standing there. The specialist and the assistant with him left us in the room for a few minutes for us to grasp what just happened. My mom and I just cried in each others arms. I left the appointment forgetting to ask for any photos or what gender the baby was. I will regret that for the rest of my life. We walked out of the office to the elevator and then to the car in a stupor. I can't remember anything. I can't even remember walking. But yet we made it to the car somehow. We all got in the car and just sat there. My husband started to cry. We held each other crying for who knows how long. We lost all sense of time. We got home and I received a call from my doctor who wanted me to come in the next day before business hours. I did a google search on Anencephaly and was bombarded by gruesome photos. I was horrified that my baby had that. I should have never looked online.

My husband came with me the next morning to my doctors office. She had "the talk" with us. About what we wanted to do...go to term (or as far as we could before the baby died) or if we wanted to induce. At first I was against induction. My doctor told me that at this gestation the baby's nerves are not fully formed and would feel no pain when it passed. I had no idea if that was true or not. I was rushed to make a decision right then and there. I had no time to think about it. I'm not sure why she was pushing for an answer right now, because in the end the outcome was going to be the same. She left my husband and I to talk about it for a little while in the room. I certainly didn't want my baby to feel any pain so what she said earlier stuck with me. I also remember thinking that I wanted a baby and the longer I stayed pregnant now the longer it would be before I could get pregnant again. Selfish, I know. I feel so guilty thinking back at my thoughts then, but what can you do. I was young and niave and selfish. After being pressured by everyone I finally gave in and decided induction would be best. It was the best decision I could have made at that moment in my life. I didn't see it as a termination of pregnancy. I still don't. What it was, was me turning off life support. My baby could not live outside me. And even inside me its days were numbered. I could not imagine giving birth to a live baby only to let it suffer in its first and last moments of life. Struggling for air, maybe feeling pain, being scared and feeling alone, as most babies with this are both blind and deaf. Those thoughts scared me, so my husband and I decided to take the baby off life support and induce.

We went to the hospital the next morning. The lady at the front desk of the hospital that we had to check in with left a lasting impression on me. Here is our conversation.

Me: (fighting tears back) Hello, we are here for an induction
Her: Ok, how many weeks are you?
Me: Almost 21.
Her: Isn't it a little early to be having a baby? (In a trying to be funny way)
Me: Yes (and I walked away)

I was so angry that she said that. And even angrier at myself for not saying something. I was told I should be home by the evening. Boy were they wrong. It took 5 days of Cytotec and no eating for my labor to begin. When it was time to push both my husband and my mom were with me. I closed my eyes the whole time because I didn't want to see the baby. I thought my baby would look like those horrible pictures I saw on the internet and I didn't want to remember my baby like that. I wanted to remember my baby just as it was in my dreams, perfect. When I pushed my baby out one of the nurses said "It's a girl." I just knew it! I was so happy yet so sad that hello meant goodbye. They immediately took her out of my room. A short while later my mom and husband went to go see her in another room. They came back and my mom told me she was beautiful. With a head full of dark hair. I asked my husband if she looked like the photos on the internet and he said no. She was gorgeous. I was so happy to hear this but I was exhausted and the only thing I could think of was falling asleep. I wasn't taken to the postpartum ward even though I just had a baby. I was taken to oncology for a room to sleep in for the night. I already felt gypped as a mother and it had only been a few hours. I slept in a cold dark room feeling the emptiness in my arms for the first time. I knew as well as my body knew I should be holding a little bundle. Little did I know I would never be able to rid myself of that lonely feeling ever again.

The next morning I asked to see my daughter who I named Genesis. They told me she had already been picked up by the mortuary and that they could arrange a viewing for me. So I left the hospital without so much as seeing my baby. I left with not only an empty womb and empty arms, but with an empty heart as well. They gave me a little pink blanket that she had been wrapped in to take home with me. I cherish that blanket so much. It still smells like baby to this day. My husband and I got in the car to go home and to figure out how to live life without our daughter. Before I even got home I got a call from my brother telling me that he and his wife were pregnant. I can't even begin to tell you the emotions that overcame me. I was crying and so mad yet I had to force myself to say "congratulations." He knew what had happened and he had the nerve to call and say that? I hated him. To this day I hate that he did that to me. But this was the beginning of a disregard of the daughter that so many thought I never had.

A day later I was able to visit Genesis in the mortuary for the first time. I got myself all dolled up for my baby girl. My entire family came with me. My husband, my mom and dad, and my brother and sister. I walked into the mortuary almost holding my breath, not knowing how I was going to react. If I was going to pass out or not. We walked into the room where my baby was laying out on a table. I cried so much as soon as I saw her there. I just ran over to her and started crying on top of her. My tears fell all over her tiny body. When I was able to clear the tears and finally get a good look at her, I felt a feeling of calm and peace come over me. I checked her out from top to bottom. Gosh she was gorgeous. She was really something even at just 21 weeks gestation. I remember her gorgeous big lips. She had my chin already and my feet. They were tiny little feat. She was wrapped up in a little blanket with her feet sticking out the end and I wanted to unwrap her so bad and hold her and see her whole body. I wanted to see it at least once but my husband told me not to. She had a little hat on covering where the hole in her head was and I wanted to see that too but once again my husband would not let me. My family then had a turn to see her and say goodbye. My mom, aside from myself, was the only one who kissed her. They then left the room for my husband and I to be alone with our daughter. For a split moment in time we were a whole family. We had our first and last family prayer with her. I brought her a bracelet and I wore the matching one. I placed it on her little body and told her that I would pass this on to her sister in the future. I told her how much I loved her and held her little body in my arms. When it was time to go I didn't want to put her down. I didn't want to leave her all alone in that room only to be put back in that box and then later cremated. Putting her down and turning my back to walk out that door was the hardest thing Ive ever had to do. As I was walking away down the hallway I wanted to go back and hold her again, but I didn't. I just kept walking knowing that that was the one and only time I will ever see my daughter. We went to eat right after and a survey was placed in front of me for joining their club program and already this horrible question was waiting for me. How many kids do you have? I looked at my husband and we both paused a moment. He grabbed the pencil from my hands and put 1. It made me so sad I just cried all through the meal. This was the beginning of the rest of my life without my baby. I still miss her to this day and cry as I type this story. What I wouldn't give to just see my baby again for a moment. And for the record, my photo above was taken just a matter of days after having my baby girl. Clearly you can see I'm forcing a half smile.

Tiffany blogs at Names on the Sidewalk


Dana said...

I am so sorry for what you have been through and the loss of your little girl. Your description of her is beautiful, I can picture her in my mind.

I can relate to parts of your story. My baby didn't have anencephaly, but I did test positive on the AFP screening. Because of that, I went for an ultrasound a week ahead of my scheduled anatomy ultrasound (thank goodness, Jacob may have already passed by the time of that appointment). They didn't see any evidence of a neural tube defect, but there was a problem with his left leg. Because of that, I was scheduled to go to a high-risk clinic for a better ultrasound (never made it there, we found out he died before the appointment). When I went for the ultrasound after my doctor couldn't find his heartbeat, the ultrasound tech said "didn't they tell you what could happen between my last ultrasound and before going to the high risk clinic". No one had told me anything and I still don't know exactly what she meant, although I assume that she meant he could die. We don't know if he did have a neural tube defect yet, but he didn't look like it from his appearance.

I can't believe that receptionist when you were checking in for the induction. You'd think someone working at a hospital would be a little better at situations like yours. I'm sorry your brother did that too. I just don't get why people think it is OK to give news like that when you have just lost your baby. He couldn't have waited a few weeks?

I'm glad you got the blanket she was wrapped in. I have the blanket that Jacob was wrapped in and I sleep with it every night.

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