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Adventures with Ellie -- T21

To the Mom with a Prenatal Down Syndrome Diagnosis

May 8, 2023

Prenatal Down Syndrome 
Diagnosis

It was a shock. Maybe you were just trying to be responsible, maybe you were older, or maybe, like me, you decided to do genetic testing just because you couldn’t wait another day to find out the sex of your baby. Whatever your reasoning, you never thought that the test would actually come back positive for Down syndrome. The day you got that phone call, your world crumbled. That baby that you were so excited about was not the baby that you were going to be having.

So you change course. You put on a brave face and go through the motions of pretending to be excited throughout the rest of your pregnancy, but the unknown before you steals your joy. The pink dresses, pink bows, pink everything you’ve dreamed about your entire life takes a back stage to the fear consuming you. Do you even decorate that nursery that you’ve been planning in your head for years? Do you buy baby supplies? Should you have a baby shower? The risk of miscarriage and stillbirth is high. Could you bear to walk into that nursery if the baby doesn’t make it?

All of a sudden you’ve turned into a high-risk pregnancy. You switch to an MFM and a hospital with a NICU just in case something goes wrong. And things do go wrong, over and over again. Doctors appointments become traumatic, anxiety-inducing events. What will they tell you about your baby this time? Increased monitoring becomes the norm, and the baby will arrive early. They don’t like to leave babies with Down syndrome in the womb too long.

None of this includes the mental drain that you have about what’s ahead. What does a life with a child who has Down syndrome look like? How will her diagnosis affect her siblings? Will she live with us forever? Will people make fun of her? Will she look like us? Will she have meaningful relationships?

So you take it day by day. This is the only way to make it through. Check yourself: Are you alive? Is the baby alive? That means you’re okay today. Don’t think about tomorrow. Today you have both survived.

Soon the baby will arrive. Soon this nightmare pregnancy will be over, and you will be sad that this miraculous time of building a baby in your body was consumed by fear and worry. Soon you will see that she is much more like a typical baby than not. Soon you will realize that she is perfect and that everything you went through was absolutely worth it. Soon you will truly understand what it means to be a member of the Lucky Few.

Hang in there, mama. Things are so much better on the other side!

Love,

Brooke

Prenatal Down Syndrome Diagnosis
Prenatal Down Syndrome Diagnosis
Prenatal Down Syndrome Diagnosis

**Photo Credit: https://www.laurenmaherphotography.com/

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Comments

  1. Shannon

    May 20, 2023 at 10:05 pm

    Oh, Brooke! This made me cry. It’s beautiful. I remember your brave face, and I’ve loved watching you and your family grow, in a million different, amazing ways, since those early days.(Side note, look how little the boys look in that family picture!)

    • mbrook625

      May 20, 2023 at 11:35 pm

      Aww, thank you! I know, the boys look so young!

Hi, I'm Brooke--mom to three amazing kids (one who happens to have an extra chromosome), wife, middle school ELA teacher, and advocate for people with Down syndrome. This page is a glimpse into how our daughter Ellie has positively impacted our lives since surprising us with Trisomy 21 in 2020. I'll be writing a lot about what we have learned from having a child with Down syndrome sprinkled with the daily adventures that come from life with a toddler. I'm glad you found us!

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