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Anencephaly – The Story of Elias Micheal Arnott

Anencephaly – The Story of Elias Micheal Arnott

We walked into our 20 week ultrasound excited and nervous. We were only nervous because we did not want to know the gender this time. We already had a 3 year old healthy boy and wanted this to be our last pregnancy, so we decided we’d like to be surprised this time about the sex of our baby.

Our ultrasound tech was so nice and funny. I remember laying down on the table and thinking she is so pretty, I wish I were as effortlessly pretty as her. And that’s when I noticed she got a wrinkle in her brow and completely stopped speaking to us.

A couple minutes went by of her not speaking to us and me and my husband giggling nervously about how we might see the baby’s gender on the screen. She then cut right to the chase and said, “I’ve been doing this for 5 years and although I can’t tell you specific results without the doctor here I’m very concerned.”

My heart dropped so hard it hurt. “What? What is it?”

I was thinking she was going to say our baby had a cleft lip or something, but instead she told us she believes our baby didn’t develop its skull.

I will never forget the look on her face as she said I’m so sorry and ran out of the room unable to even look at us.

We started crying softly in the dimly lit room and then we started laughing uncontrollably and then sobbing uncontrollably.

The doctor came in and explained anencephaly to us- that our baby would 100% die and carrying to term wasn’t even an option for us once we heard that.

How could I keep feeling the kicks when I’ll never hear their cry? I remember telling the doctor I just wanted “it” out of me and that we didn’t want to name it or know the gender or even see it.

Anencephaly – The Story of Elias Micheal Arnott

I can’t explain the horrible rush of emotions we had in those short 10 minutes that changed our lives forever and I definitely didn’t mean those things, but I had no idea what to think.

We scheduled the induction for the next day and when we woke up in the morning we picked out a name for a boy (Elias) and a name for a girl (Juno). We wanted to hold our baby. We wanted to know if it was a boy or a girl. We wanted it all.

The nurses were so kind in the hospital. The induction took almost 24 hours. When we heard our nurse, Bailey, say it’s a boy we both burst into tears. It was awful.

I saw a life flash before my eyes. A life that was supposed to happen but now won’t. I saw my two sons playing together and me tucking them both into bed. I saw all the things that I’ll never really get to see.

One of the nurses crocheted him a hat, because not even the NICU hats would fit him. He was so small. I remember being so grateful that someone had donated a tiny hand crocheted blanket to the hospital that was still too big for him, but was much smaller than the average baby blanket.


We spent time with him for almost a whole day and then said our goodbyes. I’m so thankful for the kind nurses, Now I Lay Me Down To Sleep, and my husband, and everyone who helped us during this time.

Now the support has stopped pouring in- I should be over it right? But I’m not.

I’m drowning.  There’s a chance of our future children having anencephaly too and the depression pills I was given after coming home cause a higher chance of anencephaly as well.

There’s so much to worry about, but I worry about so few things now.  

Our son just found out today that the baby isn’t going to be coming home ever and his reaction was shocking.

I didn’t know he’d understand death and that he’d plead and cry to hold his baby brother. No baby can ever replace Elias, but I know our son deserves a sibling and I’m so stressed about being able to give him one.

I’ve taken up crochet to donate my own blankets to the hospital for other babies like Elias, which has helped keep my mind and fingers busy. I don’t look at social media much anymore. Pregnant people and babies are everywhere now- well they’ve always been everywhere but now I’m noticing them a lot more.

I’m lonely but I don’t like talking to people because they say really dumb things. Even our therapist told us to try to find a silver lining. As if there could be a silver lining in my baby dying?

Someone saying anything that’s even partially supportive is rare. Don’t tell me it will get easier or that many other women experience loss. Oh and everyone says “Let me know if you need anything,” but they don’t mean it. It’s just a formality.

I’m broken. We’re all broken. We forget things now. We aren’t ourselves. We’re always tired. We’re always scared of the next time. There will ALWAYS be a before and an after Elias. We even use that as a measurement of time now “That cheese has been in the fridge since before Elias. Throw it out.”

I wish this was a story with a happy ending but it’s not. I’m not okay and that’s going to have to be okay.

Anencephaly – The Story of Elias Micheal Arnott

This guest post is written by Samantha Arnott. Follow her @samithesizzler on Instagram

Read April’s full story by clicking above.

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baby born with anencephaly