Trisomy 13: 13 Babies, 13 Stories | Still Playing School

Trisomy 13: 13 Babies, 13 Stories

By Devany LeDrew | Labels:
I am honored to be bringing you 13 stories of 13 babies all with Trisomy 13.  This project has been in the works for months yet today is Rare Disease Day.  Tomorrow is March which brings us Trisomy Awareness Month.  We welcome the chance to share our missed babies, our struggles, our pain, and our strength with you.




What is trisomy?
Babies with a trisomy have extra genetic material.  Specifically, babies with Trisomy 13 have a third 13th chromosome instead of the typical two.  Any extra or deleted genetic material can cause a variety of abnormalities and birth defects.  The most commonly occuring trisomies where babies can survive until birth include Trisomy 13, Trisomy 18, and Trisomy 21 or Down syndrome.  Of these, Trisomy 13 is the most rare and the most severe in that it results in the shortest life spans.

What is Trisomy 13?


Before our Violet got her diagnosis of Trisomy 13 we had never heard of it.  It's rare.  It occurs in 1 in 10,000 live births.  This statistic doesn't reflect the babies with trisomies who are miscarried, terminated, or still born.  It is difficult to get an accurate prevalence rate of Trisomy 13.

The extra genetic material can come from a variety of places.  Some parents are balanced translocations themselves which means that they are carriers in passing this on to their children yet they are healthy and thriving themselves (and some of their children are, too!). Some sperm and eggs are produced with extra chromosome material due to nothing either parent did to cause it.   And some cases happen randomly at conception.  This was what happened with Violet.  As her cells divided very early on, extra chromosome material attached itself to her 13th chromosome resulting in Trisomy 13.

Certain physical characteristics are common in T13 babies such as heart defects, cleft palate and lips, extra fingers or toes, deep set or underdeveloped eyes, and many more.  It's striking to me (and beautiful because I've loved Violet) how all of our babies look similar yet so different.

Facts about Trisomy 13 reflected here were gathered from
SOFT and the Offices of Rare Diseases Research.  

Who is Trisomy 13?

I never wanted my daughter to be known only by her diagnosis as a baby with Trisomy 13.  I want her to be Violet Marie who had Trisomy 13 but also had parents who love her, siblings who miss her, family and friends who remember her, and a legacy that continues to grow where she can't.

Her death is an important part of me but it doesn't define me.  Her diagnosis is an important part of her but it doesn't define her.

In the same way we will be sharing a much loved and missed baby each day for the first 13 days of March. 3/13 is Trisomy 13 Awareness Day (Get it?  3/13!) as our babies had three of their thirteenth chromosomes.  They also had so much more that we can't wait to share with you.

Behind each of these stories and babies is a family who will be encouraged by your comments, likes, shares, and thoughts.  Please feel free to reach out to them to remind them that their babies are not forgotten.

You will read the amazing stories and meet the surviving families of:

Violet Evelyn

Noah

Sephora

Quinn

Savannah

Owen

Hallie

Joshua

Flora

Jaxon

Hannah

Chace

and our own Violet Marie.

Thank you for being a part of their beautiful stories!

6 comments :

  1. I love the idea of sharing their stories - because they weren't just their illness, they were sons and daughters with a story to share!

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  2. I look forward to reading all their stories. Each of the pictures of the babies, or their feet or hats or prints, is so beautiful. <3 to each of the families sharing their babies' lives with us.

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  3. Thank you for putting this together, Devany! How special. I can't wait to read them all!! <3

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  4. Jaxon is my grandson. I think what u are doing is just wonderful.

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  5. hey is it okay if i use the picture with all the babies in it for a school project and afterwards i will delete because its for a special education program ?

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    Replies
    1. No, you may NOT use this photo for a project. Thanks for asking!

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