An Open Letter: Alobar Holoprosencephaly



Dear Beautiful Stranger,

You found my blog by searching for the phrase “should i hold my holoprosencephaly baby after birth”.  My heart goes out to you, love.  I’m pretty sure that your heart is breaking right now.

I know you’ve been researching the diagnosis like crazy. I’m also pretty sure that you were as terrified of the pictures as I was. I couldn’t understand this crazy disease and what it meant for my child. I knew it was a death sentence. I knew, when I looked at the unusual faces of these children with alobar holoprosencephaly that they couldn’t survive. That their bodies wouldn’t be strong enough. I knew it was a gift to let them slip away, but knowing that didn’t make it any easier.

You’re going through your pregnancy knowing that you’ll lose your child. You’re suffering through the sickness, the aches, the nightmares, and the emotional pain without the promise of bringing home a baby at the end. You’ll deliver a baby in order for it to die. And when the pain of pregnancy is at its worst, you’ll think to yourself, “I can’t wait until this baby is born!” And then you’ll immediately crumple in shame, because by wishing for its birth you are, in a sense, wishing for its death.

It isn’t that way, love. It isn’t that way at all. Be kinder to yourself, my friend.

I know what it’s like to rest your hand on your tummy and to feel your baby kicking while looking at caskets online. I know how it feels to be dashing tears out of your eyes as you search for the perfect little white outfit with darling lace. You wanted it to be a christening outfit or a party outfit or a blessing outfit, but instead it will be a burial outfit. I know that you want to plan birthday parties instead of funerals.

You might feel guilty. Did you do this, somehow? Your medication or you exercised too much or you were terrible in a former life? Are you being punished? Can your marriage take this?

Do you have other children? Will they understand? How do you explain death to a three-year old? How do you explain to the lady in the grocery store who wonders where your tummy has gone when you never come in with the baby?

Will you love that child? Will you look at his disabilities with horror? If he has two eyes in one eye socket, which is so frightening in the pictures you find online, will you be able to handle that? Will you be scared of your own baby?

No, you won’t. You might think so, but you won’t. We knew ahead of time what my girl would look like, and that helped prepare us. Tiny club feet, a cleft palate. Yes, the one eye socket with two eyes inside. The proboscis over the eye. No nose. I’m grateful that we were indeed prepared, because it allowed me to see the other things.

Tiny fingernails. Tiny, tiny little toes. Eyelashes. The most beautiful mouth that took sweet, sweet breaths until her time was up.

She was my baby. I felt her move and kick. I stayed awake at night, worrying about her. Worried about us and our future.

She was beautiful. Yes, her face was a puzzle that was put together incorrectly, but symmetry doesn’t make beauty. She was a living doll. Her soul felt too big for her little three-pound body. Holding her genuinely did feel like heaven, and I don’t care how cliché that is.

Yes, my friend. Yes, my precious, precious stranger. You should hold your holoprosencephaly baby after birth. Hold him because he is your baby, and you are his mother or father. It will be tender and sweet and sad, but I think you’ll be surprised at the joy. That’s your baby. That’s your little one. You’ll love him or her always. Show him while you can.

All of my love to you.






9 Comments on “An Open Letter: Alobar Holoprosencephaly”

  1. Oh Mercedes, you are a beautiful spirit. Thank you for these words to the unknown person who was looking for insight and perhaps comfort on your blog. It is here in your precious words. You are such a gift Mercedes. Hugs, Ardee-ann

  2. Mercedes…your beautiful words have left me at a loss for my own. You are one of the best. Take care, my friend.

  3. My daughter is pregnant with twins and, one of them has been diagnosed with Alobar Holoprosencephaly. She has sixteen weeks to go and, I know this has been one of her worries. Thank you so much for your beautiful words of encouragement.

    1. Cheryl, I hope this is of some comfort to her. I was pregnant with triplets. We lost one early, one had Alobar Holoprosencephaly, and the other, in a separate sack, is now a healthy, happy five-year-old. I know the fear and the sorrow, and I know you and your daughter will love both babies so much. Holding our little girl while she passed was a very beautiful, tender moment. It isn’t to be missed.I’d also suggest taking pictures, even if it’s difficult, because she might want them in the future. Also, we asked that both babies share an ICU unit for a while, since they acted like they hated being apart. Pictures of that were lovely, too.

      I’m so sorry for the situation your daughter finds herself in, but there is so much love there. Please let her know she’s free to contact me at any time if she’d ever like to. 🙂

  4. I am pregnant with our wee boy who has alobar holoprosencephaly and a major heart defect. It is heartbreaking on so many levels and looking ahead, all of those concerns you mentioned are a reality for me at the moment. So, thank you.xx

    1. Jo, I’m so sorry. I remember that place well. Now it’s nearly six years later after holding my sweet little girl, and I recall her with the sweetest fondness. Much love to you. It really does get better, but it’s a tough road there. <3

  5. I can’t believe I’m just finding this post after losing my baby boy. Mercedes, this is truly beautiful. Your words are so, so relatable to me. My 1st baby boy was diagnosed with alobar holoprosencephaly when I was 10 weeks pregnant and was told to abort, which I didn’t. He was born August 20th, 2019 and passed away on August 24th 2019. It’s hard…I feel a hole in my heart. I miss my baby so much it hurts. Your words definitely put a smile on my face bc of how relatable they were. Thank you for that.

    1. I’m so sorry for your loss, but so happy you had a chance to hold and love him. Anytime you want to talk or simply say his name to somebody, I’m here. Thank you so much for commenting. I’m very honored it helped. <3

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