Anencephaly Awareness

I am so excited to be posting this! Not only am I back to writing (which I love!) but I’m celebrating my return with the most amazing group of women! These women have looked death in the face and came out on the other side stronger and more capable than ever before. This is true, even if they don’t feel or see it! (Myself included). They are moms of Anencephaly and Acrania babies.

Sunday, May 1st marks the beginning of Anencephaly and Acrania Awareness month and May 15th marks the specific day. I will be doing an entire month of interviews, personal accounts, and testimonies of what this defect is and how it has affected both myself and other parents. In the series of posts, you’ll learn what it means to carry a baby who’s had a life-limiting diagnosis, what they’ve done to cope, and how their precious baby or babies brought joy to the world.

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Image credit to Kari: You can find more of her work at Anencephaly Strong: The Story of Marley Jane

For some it’s easy to talk about their children, for others it’s extremely difficult and painful. Some have never shared and others are active advocates of Anencephaly/Acrania Awareness. Every one of these women has been kind (and brave!) enough to share with me and you in order to shed light on what it’s like to have a baby with this diagnosis. Each and every single one of these wonderful mommas have carried their beautiful babies to term or as long as they were able. They gave these amazing children a chance to live when many others wouldn’t. Born still, born alive, born kicking, born silent… they ALL deserved the life they were given. They proved that no matter how small you are or how short your life is, you can make a huge difference. You matter. They matter!

While writing this, I am on the brink of tears. I’ve struggled for months with ideas about ways to honor Aerilyn and how make peace with the fact that she won’t be able to do “normal” things. Now, sitting here a thought struck me. Why not show the world her and her companions? My companions? What better way to do that than honor one (or more) baby and family each day of this coming month? A month marked specifically for these very unique and special children. I decided to reach out to one of my groups of Anencephaly/Acrania mommas and ask them if they’d be willing to share their stories and to my surprise, many said yes!

Then I asked a few people what they’d want to know from these women and voilà! My Anencephaly and Acrania Awareness Segment blossomed. After that I talked to each and every single one of these women and it further bloomed. What amazes me the most about it is how easily it’s coming together, even so late in the month! Literally four days before May 1st this popped into my head. Talk about last minute! But, never fear! I prevailed and did it! My hopes for this project are that it will shed light on Anencephaly/Acrania and enlighten others who don’t know about it, especially those who have a friend/family member going through this and help other women in their decision should they receive this diagnosis.

These testimonies will also be translated into Spanish so that they may be more widely available. There are so many families that receive this diagnosis and have limited information in their native languages that I felt it was important to make these stories available for them too. 

I’d like to thank everyone who helped make this happen. From my own sleep deprived brain (lol) down to the babies that, though they are gone, they are not and will never be forgotten!


*I am now permanently here. The site is still up, however I will not be cross posting anymore. Thank you for those who joined me from the beginning and who continue to follow my story. — Nicole

3 thoughts on “Anencephaly Awareness

  1. Deborah Cooper says:

    I’m so glad you are sharing our stories. So many ppl have not heard of Anecephaly or Acrania. We need to spread awareness and pray for a end of this NTD. Thank you.


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