It all started on May 20, 2o10. Eric, Maveric (our 2 yr old son) and I went to my 1st ultrasound which happened to be my first doctors appointment with this pregnancy. I was about 15 weeks at the time. The night before I wasn't as excited as I thought I would be. I commented to Eric "I hope everything is ok." He reassured me and said everything would be fine.
The next morning we walked into the ultrasound room. As the nurse did the ultrasound I lay there not exactly sure how to feel. We saw our little baby on the screen. The legs, arms, and spine. I think I was waiting for the words "The baby looks great and is growing well." But as the nurse measured the body and heart rate she started to search for the baby's head. She said "I am having trouble finding the top of the baby's head." I knew something was wrong. I immediately thought of anencephaly (which means without the brain), I remembered learning this in nursing school and I couldn't get it out of my mind. She took several pictures and said to us "I'll be right back I am going to go give this information to the doctor." When she left I told Eric that something was wrong because she was having trouble finding the head. The doctor and the nurse came back shortly. The doctor said that he believed that the baby may have some kind of spina bifida and that he was going to refer me to a specialist. He was very kind and told us he was sorry but wanted to be sure and have us see the perinatologist. He left the room and the nurse stayed with us until he called the perinatologist. I asked the nurse if the problem could be anencephaly. She said yes. I started to cry. Eric sat patiently with Maveric waiting for the next step. We were able to see the specialist that morning, which I felt was a blessing, otherwise I think I would have gone crazy not knowing everything. As we drove to the specialist's office Eric and I were in some sort of shock but we also felt calm. We sat in the car and cried for a few moments. And Maveric asked us several times "you ok? Mommy, daddy ok?" We answered "Yes we are ok" and tried to smile for him.
So again we were in another ultrasound room. The perinatologist started the ultrasound while the nurse took my history and assessment. When she finished we sat and talked and she confirmed that our baby did have anencephaly. I remembered learning about this in nursing school and seeing pictures of babies with this. The pictures can be somewhat disturbing and heartbreaking. I was grateful that I knew what to expect and knew what anencephaly meant. The doctor explained what this was and what our options were.
Anencephaly is a neural tube defect, and most severe case because it is a terminal defect. Anencephaly is when the baby is born without brain tissue, usually the cerebral hemispheres and forebrain are missing. The scull and scalp do not form which makes the babys head flat. There will be a thin membrane to protect any tissue in her head. They have a brain stem which allows them to have the necessities to live in the womb but cannot funtion very long if they live through pregnancy and birth. There are several statistics of how many women have babies with this. Also when you take folic acid this will decrease your chances but does not eliminate the chance of having an infant with anencephaly.
We asked several questions. We are not sure how long I will carry the baby, but usually these pregnancies are treated like a normal pregnancy. I could go into preterm labor but there is a pretty good chance I will go to term. Also a normal baby drinks the amniotic fluid while it is in utero, but these babies don't know to do this, so I will accumulate more amniotic fluid (polyhydramnios). This could cause me to be extremely uncomfortable as I come closer to term and i will get a little bigger than usual. It shouldn't cause too many complications, but that is one thing they will keep an eye on.
The doctor told us that if we wanted to terminate the pregnancy that it was an option. But I told her that since there was no risk to me carrying the baby that I did not want to do that and I wanted to carry her as long as possible. We also found out that our baby was a girl at this ultrasound. She explained some factors of why this could happen but that it really is unknown.
Eric and I cried off and on all day. We finally got the courage to call our parents. They were upset with the news as well as in shock. We cried back and forth to each other. When Eric and I talked to each other that day, we thought of all the different ways that our little girl would pass. We thought that it would be best if she passed away in utero, we thought it would be easier for us. But as we read blogs of parents that have gone through the same thing, many of them were able to meet there little babies, even if it was for a few minutes. Now we pray everyday that she will continue to grow so that we can meet our little girl before she goes to join Heavenly Father.
We want to enjoy this time with her and celebrate the fact that she is still part of our family. She kicks constantly to let us know she is there. We love her and know that there is a little spirit attached to her little body. Many people have asked us why we would continue this pregnancy. And we feel that her spirit is here to recieve her body although it is not perfect. We bleieve this is one of the reasons we come to this earth, to gain a body.
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