Go to content; Go to main menu; Go to languages.

Eira Rae


Eira Rae, baby with anencephaly

Eira Rae was born on December 13th 2014. Her journey into this world was the greatest blessing Bill and I had ever received.

I was 22 weeks pregnant and was in a minor car accident with my infant son. We were transported to the hospital just to make sure the two of us were ok. He was fine but for some reason they wanted to admit me and were not telling me anything after running three ultrasounds and not letting me see the monitor. I was terrified something was wrong. My thoughts were racing.

Once admitted and taken to a room a doctor came in and asked me if I had ever heard of anencephaly or acrania. I had not. He explained to me that my baby's head was smaller than that of a normal 22 week baby. He explained to me what anencephaly was and had me schedule a follow up with my regular OBGYN.

The few days leading up to the appointment my mind was all over the place having thoughts of maybe they are wrong, maybe they made a mistake. I was so scared. I had three other children and all were born extremely healthy. I could not understand what could have possibly happened.

My next appointment I could not hold in my tears waiting for the doctor to give me the results. Once again I was told Eira had anencephaly and may or may not even survive the pregnancy let alone even live after she was born but for a few minutes.

The next few months just broke my heart. She moved so much, more so than any other of my children. I cherished every kick and movement. I would lie awake night after night just holding my pregnant stomach with tears streaming down my face. I got zero sleep I was terrified thinking this may be the last day she will live inside me.

The first week of December I knew she was coming sooner than her due date of January 2nd. I felt sore and knew that any day she was coming. I received so much great information from my doctors and read so much online. Seeing all the pictures and reading all the stories about babies with anencephaly helped yet at the same time made it harder.

I was so scared to see her, afraid of what she would look like or if she would take her last breath before I got to hold her.

December 12th I went into labor. I was in so much pain with the strongest contractions I had ever felt. I ran upstairs not wanting to wake Bill wishing it would just stop or subside so I could have just one more day with her. Nothing could prepare me for these feelings of hopelessness. I finally woke him up and we rushed to the hospital.

My doctor was so kind and all the nurses tried there best to support me and were so concerned with not only Eira but Bill and I as well.

Just a few pushes and she was born I looked at Bill and said please don't look because I was trying to protect him, trying to save him from the pain that I would see in his eyes when he saw her. I myself didn't know what it would feel like looking at her knowing she wasn't going to make it. Of course he ran to her side to see her because she was his first daughter, his princess baby.

Eira Rae, baby with anencephaly

She was alive and breathing she passed her apgar tests with flying colors. Her head was completely closed. Her only deformity was a tiny quarter sized piece of tissue on the back of her head.

She looked just like me and was so beautiful with her fuzzy blonde hair and button nose. I fell in love. I could barely breathe all these feelings came over me I couldn't take my eyes off of her. We both took turns holding her, kissing her and loving her unsure of how long these moments would last. They moved us to a room after we were both cleaned up.

One of the nurses had her camera handy and took pictures of Eira alone and with us and printed them within minutes and brought them back to us. They were perfect.

One of the doctors from children's hospital named Carol came in and spoke with us a few times before offering for us to take her home where she would be comfortable and we would as well. We decided to take her home so we could spend every moment with her rather than just sitting and waiting for her to pass in the hospital. They set us up with hospice care and so forth. We were a bit scared with our other children seeing her since they would have a new sibling and then she would be taken away.

We arrived home and got her comfortable and let each of our kids come down to meet her. The next four days were the best and worst days of my life. I just sat in my bed holding her and staring at her she was so still.

She had the most perfect little lips. I loved her. I must have covered her little face with tears so many times. I couldn't leave her side even going to the bathroom was a torture being away from her.

The third evening hospice came and checked her because her skin became quite cold and her color was coming and going now. They started her on morphine and Ativan to make her comfortable. It helped but we had an episode for an hour where she just cried. It broke my heart, I finally got her calm. A few hours later she did it again it frightened me I didn't know if she was in pain I had no idea what to do. I swaddled her and got as comfortable as possible and closed my eyes.

I knew these were my last moments with her.

Every time her color would worsen I would touch her and pick her up and she came to. It was like she knew my sadness and wouldn't leave me. Finally I actually fell asleep for about 30 minutes and woke up and just knew my baby girl had left this world. She had passed while I fell asleep holding her. I knew she died in peace and in my arms.

The pain and sadness that washed over me was indescribable. I laid her next to me and just cuddled her for about an hour saying goodbye with her daddy before we called the funeral home. I changed her clothes and diaper and wrapped her in a different blanket so I could keep the blanket she laid in the four days she survived.

Handing her over was the hardest part watching her leave.

Eira Rae changed our lives. I will never forget kissing her lips or her daddy tapping her little nose. He loves teasing our kids and had to find a way with her.

She will always be our angel baby snow princess (Eira meaning snow princess in welsh).

Bill and I had her cremated and some of her ashes placed in engraved necklaces with her name I haven't ever taken mine off and never will. Every day I have healed a little bit more. There are days that I regress and pull back through. I know I have to be strong for her and my other three children.

We will never forget our Eira Rae.



Last updated April 2, 2019