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Olivia-Elise, baby with anencephaly

July 10, 2014 I found out I was pregnant. Jerry, my fiancé at the time and I had just suffered a miscarriage in April of that year so we were hesitant to get our hopes up just yet. I figured I must have been about 4 weeks along. I had morning sickness and an array of other unmistakable pregnancy symptoms that I had not had before. We were starting to get excited that we may actually be having a baby after all. We waited until I was 12 weeks along to tell our families.

When I was about 3 months along, I lost my job. Since I didn't have insurance, I made an appointment at a local pregnancy center and went the next day. Jerry really wanted to go and I wanted him to go but he had to work and didn't want to risk being late so, I went alone. Once I found the building, I went in and filled out the necessary paperwork. A very sweet woman helped me through the process. She took me to a room with a TV in it and asked me questions about when my last period was and things like that. I told her I hadn't had one since the miscarriage in April. She told me about the church and gave me a packet of information for Medicaid and a little baby hat.

I took a pregnancy test so they could make sure it was positive and it was. I waited in the hall a few minutes before she brought me to the ultrasound room. It was decorated like a nursery with a couch on the side. I was nervous as I lay on the table. The nurse that was doing it said we would just have to see what the baby said since there wasn't an exact last period date. She put the gel and wand on my belly and I took a deep breath, bracing myself for what I would see.

There it was... a little body moving its little hands and feet around. I was so relieved and excited just looking at the screen. I said, "there's really something there!" She showed me the little heartbeat at 160 beats per minute and said the estimated due date was March 20th. She took pictures or measurements for about 30 minutes or so and asked me if I had any cramping. I said no and didn't think much of it. She told me I needed to get an anatomy scan as soon as possible. I was so excited that I just assumed that was the next step. I left and thanked the woman on the way out.

When I got outside, I couldn't wait to tell Jerry. With the picture in my hand, I called him and exclaimed, "Guess what, there's really a baby!" "There's a heartbeat and everything!" He was so excited and shocked. I raced home as fast (and safely) as I could since Jerry had to go to work soon. When I got home, I showed him the picture, and we hugged each other, ecstatic. With the biggest smile on his face, he said, "We're having a baby, baby!"

I was able to get Medicaid and we found a birth center that we liked immediately. We wanted to deliver with a midwife and have a water birth after receiving less than ideal care from the OBGYN with our previous pregnancy. The first appointment was just a basic one to get health history and vitals. By the next one, we were 18.5 weeks and were able to hear the heartbeat again. We met with our midwife again. Since our next appointment wouldn't be for another month, she gave us the script for the 20 week ultrasound and told us that we could schedule it any time after Halloween to make sure they would be able to check everything they needed.

Of course, we were excited and could not wait to see our baby and find out if it was a boy or girl. I called and made the ultrasound appointment for November 3rd at 8am. We had been through the name process and agreed on Olivia-Elise for a girl and Emerson for a boy.

The morning of November 3rd, we got up early and headed to the ultrasound. I drove with my sister and Jerry drove separately since he had to work right after. When we arrived inside, I signed in and sat back down. The ultrasound technician finally came to get us after about 30 minutes. She was very professional and not very chatty. She told us that she had been doing this for 30 years. Jerry and my sister sat in the chairs and I lay there on the table. I could hardly see the screen since the table was against the wall.

Our family members who couldn't be with us were anxiously waiting to find out via Facebook messenger and over the phone. She started taking measurements and showed us the heartbeat. She concentrated intently on what she was doing. She apologized for not talking much and assured us she was trying to get the right pictures. She wrote something I couldn't decipher which I assumed was medical terminology.

At one point Jerry asked if the baby was healthy and her demeanor immediately changed as she told him she couldn't tell him that or she would lose her job. We asked if she could tell the sex and she said she thought it was a girl because there were no boy parts and she was never wrong because she only guessed. After she finished, she told me I could go empty my bladder. She said she had to go show the radiologist to see if they needed me to stay.

I went to the restroom and when I came back, my sister was holding the picture and the technician was still gone. Jerry had to leave for work so after the technician came back and said they were done, we left, and he went to work. I was kind of disappointed that she didn't say with confidence if it was boy or a girl.

When we got home, I had a few missed calls and a voicemail from a number I didn't recognize. My sister was getting ready to go home because she had to Ieave for work. I listened to the voicemail while she was rushing around. It was our midwife and she said that there was something concerning on the ultrasound. I called her back and she asked if I could meet her at the office. I didn't think much of it and let her know I would be on the way. I drove to the office while my sister headed home.

I started to get a little worried. When I got there, I waited for a few minutes before our midwife came out to get me. She was waiting for a fax. She said, "I am just going to tell you what they told me. The baby has acrania. There's no brain from the eyebrows up and there is a 99% mortality rate." I sat there thinking what does this mean? How is this baby still living with no brain? I thought it meant that I was going to have another miscarriage.

She gave me tissues but I was just in shock and didn't really know what to say. She asked me if I had anybody to call to come be with me. I had Jerry but he was at work and I didn't know if he would be able to get off. She left the room so I could call. I called Jerry with a trembling voice. I felt the tears coming then and I wasn't sure how to say it. I told him there's something wrong with the baby, it has acrania where the brain didn't develop and has 99% mortality rate. He didn't know what to do. He was still new at his job so he wasn't sure if he could just take off.

Our midwife came back and I told her he was going to come. She told me I could stay in there or go in the breastfeeding room. I went in the other room and she waited with me. We exchanged small talk and she told me from there we had different options. We could either induce early at the hospital or continue to full term or as long as the baby survived. I asked her what she thought and she said a lot of people terminated. While I sat there, she checked on me on and off. I thought is this some kind of sick joke? How does a baby not have a brain?

I was keeping my family updated via messenger. I told them I didn't want to go through that again; not another heartbreak. I also couldn't imagine carrying this baby and feeling it kick knowing it would die. She asked me if they told us it was a boy or girl. I numbly told her she thought it was a girl. I waited about an hour before Jerry called to say he was coming. I was scared and tried to process everything that was happening.

Jerry got there, they opened the door to the room, and we just looked at each other. I was so glad he was there. He came and sat down with me on the couch and started crying. He said, "God hates us." We just cried and held each other for a little bit. It was as if the world was standing still. The lab lady, who we didn't really know, came to check on us. I asked her if our midwife could come in to explain it to Jerry so he could understand. I told her I didn't feel like I could continue the pregnancy and Jerry said he would support whatever choice I made. Either way, she said we would be able to hold her and spend time with her.

I couldn't imagine holding a dead baby that wasn't even fully developed. What would it even look like? How would it feel? Our midwife said she could call high risk at the hospital so we could have a follow up and get a more detailed ultrasound. I didn't have to decide anything then. As we left, our midwife hugged me and told me that I was going to get through this and I had a man that loves me.

On the drive home, I wept going down the interstate and everything else was a blur. When we got home, we held each other and cried. We looked up the diagnosis online to find out more about it. We had never heard of it and knew nothing about the condition. The first few pictures were scary. Jerry just cried and hugged my belly and told the baby how sorry he was. We were at such a loss and felt helpless. Our midwife called us to let us know she made an appointment at the high-risk office for the next day. Jerry would not be able to go although he really wanted to be there.

The next day, Jerry left for work and told me to keep him updated. He and my family were hoping that it was a misdiagnosis. As I prepared to go to the appointment, I was nervous and barely able to keep it together. I signed in and the people behind the desk had my file that must have been marked. I sat down and waited. I tried so hard not to break down crying. The nurse called me back quickly. She took my blood pressure and took me into the ultrasound room. She was nice and seemed sensitive to the situation.

She pulled up what she had on her computer and read the report from the very first ultrasound. She told me they did not say anything was wrong. For a second I thought maybe they were wrong. She started the ultrasound and had the screen toward her. I thought great, she's not even gonna let me see. Then she turned it toward me and showed me as she took the pictures. The whole skull wasn't there. I asked her if she was able to tell me if it was a boy or girl and she said it was a girl with the confidence the other woman didn't have.

I felt a tear roll down my cheek as I thought of course it's a girl. My family is full of girls. She asked me if I wanted pictures and I said yes. She gave me three: two face shots and one with her girl parts that said I'm a girl! The perinatologist then came in and went over the pictures and showed me how the top part of the brain was missing and it should be there in a healthy fetus. He asked if I knew what I was having. He went over the options and said if I chose to induce that he would be available next week and if he wasn't he would fill his colleagues in. He told me that anencephaly was one of the few disorders where it would still be legal to induce until the 24th week.

I told him that would most likely be what happened. There was no pressure and he even mentioned how they were a conservative hospital. After I met with him, I went with the genetic counselor. He was nice and went over so much with me. I was really wishing Jerry was there with me to be my second set of ears. He went over all of the biological information, which was very textbook. Anencephaly is a neural tube disorder where the spinal cord doesn't close all the way in the first few weeks of pregnancy before most women know they're pregnant. He made a family tree from the genetic available information from both of our families.

He said she was alive then because the placenta was keeping her alive. She was not in pain and I was probably in more pain than she was. I was basically her life support. The whole time I was sitting there everything felt surreal. He went over the options again and said we could decide to get a second opinion or if we chose to continue, we could get palliative care. At that point, I was still thinking we would induce early. He told me to let him know what we decided. I cried my eyes out on the way up the elevator and once I got to the car. The office had called to say they forgot to take my weight so I went back in. When the nurse was taking my weight, she told me they thought I was being admitted admitted that day. I wasn't.

When I got home, I called my mom. I could barely talk through the flood of tears. She let me cry and just listened. I told her they confirmed it was anencephaly and it was a girl. She said they had so many questions and I told her what I already felt about inducing. She asked me if we were going to name her to remember her and I told her we probably would. She said she wouldn't get to meet her but she wanted me to be ok. That broke my heart even more. She said her and my other sister went to my grandparents' the day before and my grandmother was on the floor praying. Nobody understood why this could be happening.

After I got off the phone with her, Jerry was getting home and I told him what they said. The lady from the birth center called me to see how the appointment went and I told her we would probably induce. She told me to let them know and not to think we had to go through it alone. Somebody would go to be with us.

That week was one of the hardest in my life. The next few days I was really torn about inducing early. Part of me did not want to have to make any decision at all. Jerry would have a Friday off that we could induce before we hit the 24-week mark and in my mind, we could do it then and have it done with. One day I texted him and told him how torn I was about it. He was working every day and I had a lot of time on my hands being at home all day.

It didn't feel right to just induce and not even have the chance to possibly meet her alive. I had so many questions. We both felt that it shouldn't be up to us. That day we decided to carry her to term. I felt such an indescribable sense of peace come over me immediately after we made the decision. I thought, God, I don't know what this will be like but I am going to try my best to trust you. I had fallen away in my faith and began drawing closer throughout the next few months.

For the rest of the pregnancy, we cherished the time we had with our baby girl and tried to make the most memories possible. She was a very active baby and loved to kick all the time! Instead of being sad to feel her kick, I could not wait for her daddy to feel it too. His expression was priceless the first time he felt those little feet through my belly. We continued prenatal care with our midwife's office where they treated Olivia-Elise like they would any other baby, with compassion and dignity. We would deliver at the hospital instead of the birth center like we had planned. Our doula went with us when we met with the palliative care team ahead of time to communicate our wishes.

The following months, I researched more about anencephaly and found the website anencephaly.info, where I read the beautiful stories of parents who had walked this path before us. I reached out to brave mommies who knew what we were going through and found hope. Family sent us memory making items and continued to honor Olivia's life in so many different ways.

There was grief and joy intertwined as we waited to meet our sweet girl. We sat down several nights to make a birth plan and detail what we wanted done with her body once she passed and could not bring ourselves to do it. We couldn't even begin to plan for her funeral. I didn't want constant heart monitoring in case she didn't make it through labor. I didn't think I would be able to go on if I knew she wasn't with us anymore. I prayed on my way home from work many nights that she would be born alive and that we could have some time with her.

I rang in the new year with my sister since Jerry had to work. On the beach, listening to a live band, she felt Olivia kick for the first time. Her reaction was priceless. Olivia went to each of the Disney parks and experienced the magic. She went to a Luke Bryan concert and danced with her auntie. We made a cast of my pregnant belly to remember her with and enjoyed the lazy river at the water park.

Closer to the end of my pregnancy, our doula (the lab lady we didn't' know at first) called funeral homes for us and informed us that she found one that would cover the expenses. We were so grateful. She and our midwife helped us plan for different labor scenarios in case it started on its own. A hospice nurse came to our house and we planned for different scenarios and had their information in case we needed them. We also contacted Now I Lay Me Down To Sleep, an organization that does remembrance photography for families who lose babies. Our photographer had a heart of gold and offered to do maternity pictures before we were due. She talked with us and let us know she would be available once we went to the hospital.

My "due date" came and went and we started to try different things to get labor going on its own but nothing worked. When I was 42 weeks along, our midwife's office could not legally care for us and we would have to go to the hospital. They said we could choose to wait it out a little longer or go to the triage there and see what they said. They may want to admit me since it is so far out or they could give me something and send me home. Our doula and midwife went over what to expect as much as they could. I was worried about how much different an induced labor would be from regular labor. Our midwife said other women had described it as more intense. Everything felt surreal and I couldn't believe I was about to meet my daughter.

Once we found out that we were going to the hospital, my family got ready and drove through the night in order to be with us. The night before we went to the hospital, we went to bed, anxious about everything that was about to happen. Our family arrived early the next morning and we spent time with them, putting off going to the hospital for as long as we could. By around 11, we figured we shouldn't keep delaying the inevitable and left to go to the hospital. We loaded up the car and nervously left.

Olivia-Elise, baby with anencephaly

When we got to the hospital, we filled out the paperwork, gave them our records, and waited to see what we would need to do. The nurse gave us our stuff and sent us to triage. We went into another office and met with a woman that evaluated us for admission and informed us we were going to be admitted. As she looked over the files, she told us that knowing stories like ours was one of the hardest parts of her job.

We then went with another nurse that took my blood pressure, weight, and temperature. After that, we went to the triage exam room where we met the nurse there. She was very nice, reviewed our birth plan, and told us that we would most likely be induced using misoprostol since labor had not started on its own yet. She gave me the gown to change into. For most of the time we were waiting. She checked me to see if I was dilated at all and I was still about 1 centimeter.

The doctor came in with the portable ultrasound machine. We were excited that we would get to see Olivia and so was everybody else but she came in, barely introduced herself, and quickly scanned over. She asked us if we knew the prognosis with no sympathy or compassion in her voice. I asked about the fluid, hoping she would interact more. She said it was fine. At that point, she must have been making sure she was in the correct position for birth. All we saw was her spine on the screen for those few seconds. She left the room quickly, leaving us disappointed.

Another tech came to draw my blood and put my IV in for any fluids or medications I would need. I was hooked up to a contraction-monitoring machine but we still had only Braxton Hicks. By almost 4, there was a room ready for us. Our nurse let us know and gave me a hug and comforting words. Another nurse came to wheel me to the next room. We all made our way up the elevator. We were in a room on the third floor where we would be until it was time to move.

Around 4:30, the nurse came in, checked me, and started the induction process. They would continue every 6 hours until labor was going by itself. There wasn't much to do but look outside or watch TV. Our family arrived soon after we settled in. Everyone had purple on and the green and purple ribbons with butterflies. They brought her purple name wreath for Olivia-Elise.

While we waited, we had a baby shower for Olivia with the outfits my mom had brought her. We listened to her strong, steady heartbeat and spent quality time together. Around 11 that night, after everyone went home, the next nurse came in to check my progress and continue the induction. She said I was only at 1.65 centimeters. Not long after that nurse left, a new doctor came in and introduced herself. She was warm and kind. She informed me that she was going to increase the dosage of the induction drug to move things along.

After the commotion finished for the night, we got ready for sleep at about 11:30. I slept on the bed in the room and Jerry slept on the murphy bed beside me. At about 1:30, I woke up and I went to the restroom. I was starting to feel contractions. They weren't agonizing but they couldn't be ignored either. They felt constant. I lay there for a few minutes before I woke Jerry up. He got up with me and came to lie on my bed. He put on our playlist of songs and gently stroked my hair. He asked me what he could do and I wasn't sure. He rubbed my back and we slow danced so I could move around. I felt the contractions intensifying by the minute.

After about an hour, the nurse came in as we were about to call her. I was already laying down almost crying. They took my breath away. She checked me and I was at 3cm. The nurse said I was dilated enough to go to the labor and delivery room and that they had and IV medication for pain that she could give me until I could get an epidural. It would only take the edge off. We wanted as natural birth as much as possible in the birth plan but I was ready for some relief already. Things were moving a lot faster than we had expected or been told.

By the time the nurse came with the medicine, I was ready to cry. She gave it to me and almost immediately, I felt woozy. I had a carefree feeling but could still feel the contractions. I felt dizzy and needed to be still. I lay on the bed while we waited to move to the next room. I started to feel sick so asked for the blue bag they had to hold onto. When the nurse said we could move, Jerry gathered up all our stuff and put on the cart while someone put me in the wheelchair to go. I was a little out of it.

When we got to the next room at about 4:30 am, I threw up. Not long after we got in there, I started having intense pressure. When I sat on the toilet, my water broke. I was petrified now for Olivia knowing that was what was protecting her head and hoping she was still ok. After that, things kept building. I tried to sit on the birth ball and relax but I couldn't. I was in tears and at the height of a contraction on my tippy toes trying to do something to make it go away. I felt like my body was being ripped in half. I was desperate for an epidural.

I was at about 8 cm already when the anesthesiologist came in. She told me there was a chance it may not work since I was so far along already. I didn't care. They prepped me for it and she waited for me to be done with the current contraction before she administered it. The pain went away immediately.

Around 5 or 6am, Jerry started to call our list of people to come to the hospital. While he was on the phone, I could just hear the fear in his shaky voice. He was trying to be so strong for me... He called our doula and texted our family. It was kind of a blur by then.

Our family members, our doula, and NILMDTS photographer arrived at different times. The nurse had checked me and said she did not feel a cervix, which meant it was almost time. Jerry asked what she felt and she said the head with bones. He became hopeful when she said that. Our photographer captured precious moments leading up to the birth as we spent time as a family. As we waited, our families were by our side supporting us in any way we needed.

Sometime in the middle of if, the female doctor came in and said we were going to start pushing around 7am. As soon as she said that, I was the most scared I had ever been in my life. I didn't know what to expect. No books or advice could have prepared me for that moment. I don't know where it came from but I asked my mom if she could go get my grandmother to pray with us. She came and took my hands and she prayed in a room full of people with monitors beeping loud as I cried. She asked for strength, courage, and peace. It was essential to me then and I didn't care what anyone thought.

After that, Jerry hugged me and I told him we finally get to meet Olivia. He told me he was so scared. I told him I was too. 7am came and went and the nurse said they were going to let her labor more so it would be less traumatic on her head. I was starting to feel pressure at each contraction and getting the urge to push but I couldn't. By 8:30, it was time to actually push. The doctor from the day before showed up to help with the delivery along with another female doctor.

I began to push with each contraction. Each time I pushed, I felt like I should be making progress but I wasn't feeling any different and had to keep pushing. I sipped of water during the downtime. When I pushed, I heard Jerry say push harder! I was already feeling strained. Our doula reassured me that I was doing great and so was Olivia-Elise. I started to get discouraged. After almost an hour of pushing, she was almost out.

I thought she would be out after one more push but there was commotion. Her shoulder was stuck. Both of the doctors had been trying to pull on her head so the rest of her would slip out, causing me to panic. The doctor from before took over and performed an episiotomy before I knew what was going on. I screamed in pain and shock. I lost focus and our doula helped me concentrate again.

After another push, Olivia-Elise was born April 4, 2015 at 9:32 am. They placed her on my chest and her daddy cut her umbilical cord. She wasn't moving or crying but her heart was still beating. When I held her for the first time, I was in awe and speechless. She was 4 pounds, 11 ounces and 16,5 inches.

Olivia-Elise, baby with anencephaly

We held her and spent time loving her and making memories as our photographer captured each moment. The nurse kept checking her heartbeat. She was fading away. She was lying on the bed beside me and I grabbed her hand hoping maybe she would be able to grab it. The nurse checked her heartbeat again and it was 16 beats per minute. The next time she checked, there was nothing.

At 10:00 am, she went to be with Jesus. Jerry broke down sobbing. I was heartbroken but at the same time, I had the same indescribable peace as before.

We had just spent all of our daughter's life with her in our arms loving her and parenting her the only way we knew how. The nurse and Jerry gave her a bath. After that, a nurse asked if we wanted to do a baptism. We had not planned to but Jerry immediately said yes. The chaplain came and baptized her with sprinkles of water. A peace fell on the room.

Olivia was taken to the side of the room where everyone else kissed and loved on her. Jerry supervised as the nurses took her hand and footprints. I kept asking if they weighed her yet. Jerry brought her back to me and we held her together and looked at her little body. She had long fingers and nails. Curly eyelashes just like Jerry. She had little freckles on her chest and curls on her head already. We adored her. We didn't see her deformity, but our beautiful little girl. We looked at her perfect feet with ten toes that had kicked me all over the place for months.

Our photographer got pictures of her in a polka dot onesie we chose. She was so delicate and fragile that I was nervous to change her or move her much but Jerry gently handled her and helped pose her. We spent the night with her and and most of the next day, which was Easter.

Leaving her at the hospital and leaving with empty arms was the hardest thing I have ever done in my life. We were able to come to the funeral home the day before her service, dress her in the gown she was buried in, and spend some time with her one last time.

Since we had not been able to bring ourselves to preplan any aspects of her funeral, we did so in the days following her birth. Her service was the Friday after she was born. Her daddy made a slideshow of pictures along with a playlist. We displayed purple and green balloons and several flowers that my grandmother arranged the night before. I read a letter I wrote to her and we released the balloons at her gravesite.

I was approved and donated some milk to the local milk bank for a few weeks after Olivia's birth and death. It was a struggle but I found it very healing to help other babies.

God has used our loss to bring us closer to him and shown us that Olivia-Elise's short earthly life was not without purpose. Her name means peace and consecrated to God. We grieve with the hope that we will see her again.

Romans 8:28: and we know that all things work together for good to them that love God, to them who are the called according to his purpose

2 Corinthians 12:9: And he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.

Jeremiah 29:11: For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future.


Read more about Olivia Elise on her facebook page.



Last updated Mai 1, 2019