Anencephaly: One Mother's Journey (Trigger Warning)

Trigger Warning: Heartache, Infant Loss, and a Mother’s Story Ahead.

Amy is sharing her journey with us today. Often, when a baby leaves this earth, she is not talked about nearly enough. Amy is not stronger, braver, or less hurt by her loss than any other mother who has experienced such heartache; however, she knows that her story may connect to other parents, and by retelling it, she is keeping a part of her baby girl, Serenity, alive in her heart.

Serenity’s condition: Anencephaly

After Serenity's diagnoses, I remember going home and searching for hours about her condition. The doctors had told me it was fatal, but I was determined to find anything I could to prove them wrong. Sadly though, every article, every support group, every study supported what the doctors had said to me. She would die. I had a choice to make though. I could abort her as recommended by the specialist or I could carry her to term. The decision I chose came easy and was one I will ever regret. I would keep her. I remember looking at images of the babies with Anencephaly and having such empathy and sacredness for them and their moms. I was heartbroken and I was scared. Would my baby look like that? My poor baby. Through out my pregnancy I continued to constantly read about her condition. I educated myself and educated others. I was trying to best prepare myself.

Time leading up to Serenity’s birth:

I could crawl into a deep depression, turn cold, and be angry or I could turn something so tragic and make it somehow a beautiful thing. I wanted to find acceptance, understanding, and the beauty of it all. Every day I would post about Serenity and my journey with her though social media. I would share scripture, positive quotes, my thoughts. There were many days I would just cry and then there were days where I would still be able to smile. One of the many things that helped me though my journey was the support that many organizations brought to me. I received many message from strangers: cards, gifts, and care packages including one from "My Baby's Heartbeat Bear." Recording her heartbeat brought me to tears. When a mother is going through such a heartbreak, keepsakes like this play such a vital role in helping to keep the strength to continue to move forward.

Serenity’s birth:

Towards the end of my pregnancy, I was diagnosed with a condition called Polydramnous. Polyhydramnios is the excess of amniotic fluid n the amniotic sac. I was extremely uncomfortable. At 33 weeks my water broke. I was not scared. I was so excited to meet my baby. I just prayed she would be alive. Thats all I wanted. A few hours into labor, I decided to stop monitoring her heartbeat. If her heart stopped I did not want to know. Before she came, I knew in my heart she did not make it. She was placed in my arms and the only thing I was wishing for -her cry- was not there. I just cried. She was so beautiful. I felt nothing but love.

Post Birth:

I was very fortunate that the hospital I had Serenity at had a Coddle Cot donated to them years prior. This Coddle Cot made it so I was able to preserve Serenity's body to take her home with me and spend time with her. I feel like this is something a lot of women are not aware of. Having her with me was very healing. I was able to make a lot of precious keep sakes, paint her nails, read her a story and take pictures. (Lots and lots of pictures.) I was also able to do a private ceremony at the ocean with her and my family. I know a lot of people may not understand the way I grieved, or how I needed to spend time with her, but thats ok because we all have our own ways in dealing with our pain.

The day I had to give her up was the hardest. Looking back on it now, I really don’t know how I had the strength to do it. I remember being in my bedroom with her. My parents were due to come over any time, as they were the ones who would bring her to the funeral home for me. I was trying to breathe her in the best I could. I was trying to memorize every detail of her. When it was time, I kissed her one last time on her belly and I handed her to my mom.

This is more than my story, it is my life. Serenity was real. She will always be in my heart, and I am so grateful to have grown, loved, and held my precious baby girl.