Ember's story... summarized

I want to start off by saying that although the loss of baby Ember has been extremely difficult, I feel it has been made much easier by our faith in the plan of salvation and the loving prayers that have been offered by so many in our behalf.

On October 13 I had my 20 week ultrasound. Sheldon was still deployed to the Middle East, so my parents drove up to be with me for what we thought would be a day of happiness and celebration. The ultrasound was amazing. We were able to see little Ember move around and her little heart beating. I was so excited to find out we were having a girl. I was even able to receive a phone call from Sheldon after the ultrasound to let him know we were having a girl and that everything seemed fine. The only problem was that they had said that the doctor wanted to have a consult with me after the ultrasound. I brushed this off and assumed it was because I was high risk. Sheldon, however, was immediately concerned when I told him I was having a consult. He was right to be concerned.

After my call with Sheldon we were taken (my parents and I) to a consult room where the doctor explained to me that during the ultrasound they had seen that the baby has a neural tube defect called “anencephaly.” I had never heard of it, but my mom had given her nursing background. They had to describe to me that early on in the pregnancy her brain and scalp hadn’t developed completely and that babies with this condition cannot survive outside of the womb. Obviously I was devastated. I can easily say that was the worst moment of my life. There are really no words to describe my shock and sadness. I had been feeling her move for weeks. I had earlier ultrasounds in which everything had seemed fine. We had announced our pregnancy to all our family and friends. This was my baby. My precious baby we tried to conceive for 18 months. I had been extremely bonded with her from the moment I found out I was pregnant. I couldn’t imagine losing her. I couldn’t imagine that there was anything wrong with her.

The next step was to tell Sheldon. I can honestly say I do not think I could have made it through my pregnancy with Ember had it not been for Sheldon’s unwavering faith and strength. I hated having to tell him the news over the phone while he was on the other side of the world. His reaction was sadness, but also a calming peace. We were able to work with the Red Cross to bring him home early from his deployment. He was with me within the next 48 hours. I have a much greater appreciation for the Red Cross since this experience. I found the people that work for them are incredibly compassionate, helpful and professional.

We had to decide if we were going to continue the pregnancy or terminate it. I tried to consider both options, but really never seriously considered terminating. I knew that if at any time my health were at risk I would be induced. I just knew that termination was not for me. I wanted as much time with my baby as I could get regardless of any complications or discomfort I would feel during the pregnancy. I knew that no matter what she looked like, or the health problems she had I loved her the same and could not treat her or the pregnancy any different than I otherwise would. That was the easiest and best choice I could have ever made. Very few people have questioned my decision to carry her full term and I am grateful for the respect that others have shown to me.

We made the decision to keep the details surrounding Ember’s health just within a small circle of people. I never thought I would be a private person, but this experience has shown me that some things are too personal to share publicly. I also knew that telling people about Ember would make them sad and uncomfortable. It is a horrible feeling to know that your reality has negatively affected someone else’s day. People usually didn’t know how to react or what to say, and I just wanted to avoid the awkwardness. I also think I wanted to protect Ember from any sort of judgment she might receive from those who might Google anencephaly. It is a disfiguring condition and I just didn’t want people to see my baby with that in mind. To me she is normal and beautiful and perfect and I just don’t want others to feel any differently about her.

I was warned that I would have an incredibly uncomfortable pregnancy. Those of you who have been pregnant may laugh at that statement. I did too, until I got to about 27 weeks and my comfort took a severe nose dive. Babies with anencephaly often do not have the reflex to swallow the amniotic fluid so it just accumulates in the uterus. By the time Ember was born at 34 weeks I had about 4 times the normal amount of amniotic fluid that women have during a normal pregnancy. They drained 4 liters of fluid from my uterus before she was born and that was after the sac had ruptured. I was growing at a much faster rate which was extremely painful and embarrassing. Yes, I know I was huge. The way I see it is the only thing I will ever be able to do for this sweet child during her time on this earth is to provide her with a body. The only sacrifice I will ever be able to make in her behalf is to carry her and protect her for as long as my body will let me. Do you know what? It was worth every second of pain and discomfort.

Oftentimes women miscarry anencephalic babies very early on. They rarely make it to 20 weeks, and those who do can go into preterm labor at anytime. It is common for the baby to be stillborn or pass away during pregnancy without any warning. When my water broke last week I knew it meant that her time had come to say goodbye. She blessed us with her spunky personality (she was incredibly active during the pregnancy) and I believe the Lord needed her back with Him. She was born at 9:50 am and was with us for just over an hour. We all had time to see her, hold her, tell her how much we love her and kiss her goodbye. She has already taught me so much and I know she will continue to teach me throughout my life. I feel so lucky to be her mom. I know she is an incredible person and I can’t wait to see her again and learn more about who she is.

I will continue to post some more things about her as time goes on and I feel ready. I really appreciate the love and respect that others have shown to us. I know that people might have more questions and I am open to those, just please email me at michellemasias@yahoo.com.