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Trisomy 13



This page is in honor of April Rey. April Rey was diagnosed with trisomy 13 when I was 15 weeks pregnant. I'll be documenting our journey on this page.

Our Journey with April Rey

Baby V #2 Update 15 Weeks- The Longest Wait of Our Lives

Trisomy 13 - The Day After Our Heartbreaking News

Genetic Counselor Questions Asked and Answered

Trisomy 13- Why Would I Ever Consider Not Fighting the Fight?

Trisomy 13- Getting More Information & Our Plan Moving Forward

My Worst Fear That I HATE Admitting     

Trisomy 13- April Rey's 17 Week Anatomy Scan

In Honor of April Rey- A Donation That Can Save Lives

Click to donate in April's honor. 100% of proceeds go direction to St. Jude.

Our Visit to Hopkins Fetal Therapy Group

One Week Until Induction day

Helpful Things to Say to a Parent Walking This Path- Grief & Trisomy 13

April's Birth and Death Announcement 8/8/17

Induction Day 1- Taking the Pill

April Rey- The Girl Who Changed My Life // A Note From Our Photographer

A Note From My Mom About Leaving the Hospital

April Rey's Birth Story

A Tattoo in Honor of April Rey

After The Fact- How We Feel About Our Decision to Induce Early and Terminate the Pregnancy

I Didn't Come Home With a Baby, But I Still Gave Birth

If you are considering induction/early termination and want a safe space to talk about your options, or perhaps you've already induced and lost your baby, please join this Facebook group that I've created to be that support group and safe space. 

Dear April Rey -(From Auntie Maria and Uncle Adolfo)

"You Just Have The One [Child]?"

Dear April Rey- Today Marks One Month

One of My Daughters Doesn't Get to Grow Up, and the Other is Growing Up So Fast


Pro-life or Pro-choice? Did April's Story Make You Change Your View? Think About New Circumstances?

On the Sideline of Grief

Behavioral and Sleep Changes that Occurred with our Older Daughter

A Tree for April

Grieving Our Daughter- No One Knows How to Navigate the Storm for Themselves

Helpful Things to Say and Do if Your Friend Has an Unborn Baby With a Terminal Condition

2 Books to Help Your Toddler Get Through the Loss of a Baby
       
Trisomy 13 Stories 

If you'd like to share your story here, I'd be honored. I'd love to read the stories and learn, and I'd love to celebrate your baby's life on this page. I find that the stories found online are under representing those that chose to terminate their pregnancies, and those that chose to carry to term but put their child through no lifesaving measures. I'd love this page to fill that online void. Those parents need a voice so they don't feel alone. So many have chosen this route... we need to hear about it more. Please send me a message if you or someone you know is interested.

Trisomy 13- The Story of Addison Faith
 
Trisomy 13- The Story of Eden Lynne


Resources

A Heartbreaking Choice - "This website supports women who have made the "Heartbreaking Choice" to terminate a much wanted pregnancy."

Now I Lay Me Down To Sleep- Find a photographer in your area, resources for specific conditions, information for families that have lost their babies, and so much more. 

Brain and Tissue Donation of Trisomy 13 Babies- The University of Maryland in partnership with NIH, accepts brain and tissue donations from babies that have trisomy 13. 
    

4 comments:

  1. My heart hurts for you. I'm so sorry about April. I hope you and your family hold each other tight and cry, laugh, and remember her together.

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    1. Lindsay,
      I have no idea why I'm JUST seeing this. Thank you so much for your kind words. <3

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  2. Thank you so much for sharing your story! My husband are going through this right now... I'm 23 weeks pregnant with our son, Ben. He has been diagnosed with Trisomy 13.

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    1. Valerie,
      I am so sorry to hear this. Please feel free to email me (mamasorganizedchaos @outlook.com) or connect on my facebook page... I am an open book if you have ANY questions... feel free to ask. My heart just aches that anyone has to feel this pain.

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