Creating Connection, Community, and Awareness One TTTS Story at a Time

Welcome to TTTS Parents and the stories of our experiences with Twin to Twin Transfusion Syndrome.

This blog was created as a place for parents to share their stories of TTTS; memories, hopes, fears, pain, joy, grief and celebrations. It is updated and maintained by the TTTS Support Team. All experiences and outcomes are welcome here.

HOW TO READ THIS BLOG

Click on the categories drop down box and to find the categories you are interested in reading. The blog has been designed this way so that you can choose to read only the stories you want to read.  As we add more stories more categories will also be added.

Please note that all blog posts are personal experience and are not to be construed as medical advice. If you have concerns about your TTTS diagnosis, the medical options available to you, please consult your MFM (Maternal Fetal Medicine), perinatologist or OB immediately. You can also contact Fetal Health Foundation or go to our “What is TTTS?” page to learn more.

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What I Wish I Knew 2019

Thank you to everyone who participated in our campaign “What I Wish I Knew 2019” for TTTS Awareness month. If you would like to see the photos with their stories on our Facebook page, please click here. Or you can watch the video below.

We believe that through our stories we can build community, raise awareness and improve the level of care for all future TTTS families.

 

Wave of Light 2019

To honor and remember all the babies lost to TTTS, TAPS, TRAP, SIUGR and their complications we created our first Wave of Light video in 2019 for Pregnancy and Infant Loss Awareness Day, October 15th. These babies are just a small number of the babies lost every year to these pregnancy complications.

 
 
I Am a TTTS Dad 2019

 

In 2019 we wanted to make sure that the fathers in our community and their experiences of TTTS were acknowledged. We had a group of courageous men who participated in this awareness campaign and shared some of their thoughts and experiences on the deaths of their babies.

 
 
If you would like to share your story or participate in upcoming awareness campaigns please email us at TTTSSupportTeam@aol.com.

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