affected by anencephaly?

We are so happy that you found us on our journey. While we wish you were here under happier circumstances, we are grateful to be able to provide you with any support that we can to help you in your journey. 

As a mom to an Anencephaly warrior, I know all too well the conflicting feelings of carrying a baby that you love while simultaneously feeling the burden of the impending passing of that same child. It is normal to have a whole spectrum of feelings. Personally, I felt immensely devastated at the time of our diagnosis and moved through many stages of grief until I was able to accept our journey. A life limiting diagnosis is also made more complicated because you are forced to grieve two times. One time for your child's initial diagnosis and then second at the time of their passing. Because of my belief in God and that He does not punish but is the ultimate planner in our lives, I know that through great sorrows come great triumphs. While, in the thick of this journey, it can be hard to see how anything good can come from something so terrible I have always felt it was important to search the deepest darkest places of my grief for gratitude and light. The more I did this, the more possible it was for me to find hope, happiness, contentment, and acceptance for our circumstances. Elaina means bright, shining light. We named her prior to her diagnosis and I cannot help but think that God played a part in that. It is because of her diagnosis and the happiness she was able to bring during her pregnancy that I was convicted to find a way to share her story and legacy and bring happiness to others. That is our personal positive. Like us, I truly feel that other families affected by anencephaly can find their personal positive through their struggles. I am eager to help this happen. If you have just received an anencephaly diagnosis, please reach out to me via email using the subject line "Here for Hope". I promise to respond. Whether you need recommendations on local (in St. Louis) physicians, support recommendations, someone to talk to, emotional support, or anything else, I am happy to help to the best of my ability. You are not alone and you can and will survive this journey. 

Love, 

Morgan

If you are the recipient of a hat for your anencephaly warrior and feel comfortable sharing with us your child's story, we are so eager and happy to hear it. We will not publish anything without your consent. This can remain completely confidential. If you wish for your story to be shared we would love to highlight your child's story in your words on our Anencephaly Army page. Send us an email at the bottom of our home page! 

Have you recently received a diagnosis of anencephaly and are local to St. Louis? We highly recommend Mercy Maternal and Fetal Medicine. They were a blessing in Elaina's journey and are truly advocates for you and your child. Again, if you would like more information on our experience, please send us an email at the bottom of our home page. You can also check out their information more at https://www.mercy.net/practice/mercy-clinic-maternal-and-fetal-medicine-medical-tower-b/

Have you recently created an organization to help the anencephaly community or to share the legacy of your anencephaly warrior? Have you come across an organization through your journey that you feel is worth sharing with others on a similar journey? Please send us an email at the bottom of our home page. We would love to view and potentially highlight these organizations on our Anencephaly Army page!