Living With Purpose
Today is my daughters’ 4th birthday. Sweet Tiny and Kathryn. But Kathryn is not here to share the day with us. Because my girls had stage 4 TTTS. Kathryn developed severe hydrops caused by TTTS, and developed heart and lung problems. She lived for two days, but could never be stabilized. Understanding TTTS December is […]
Today is World TTTS Awareness Day. December is TTTS Awareness Month. Twin to twin transfusion syndrome (TTTS) is a disease of the placenta that affects identical twin pregnancies (or higher gestations) who share a placenta (monochorionic). The shared placenta contains abnormal blood vessels which connects the umbilical cord and circulations of the twins. The events in […]
Emotions. They can be weak, strong, good, bad. We go through highs and lows, gladness and madness. And sometimes, in a really bizarre scenario, all of them at the same time. I feel that way often. Happy, mad, glad, sad, all melded together. I feel that way when I glance up and see the picture […]
In 2011 a group of parents of identical twins started banding together, united in the grief over the death of their child(ren) due to Twin to Twin Transfusion Syndrome – TTTS. We had firsthand knowledge of the dark, desperate, isolating and confusing days and months after the death of a baby. In our desire to […]
I support Rare Disease Day. You can find more about this and how you can support too at the Rare Disease Day site. And please help spread the word! They have seven easy steps you can take to help spread the word and support the Rare Disease agenda. Related articles Rare Disease Day recognized in […]
Three years ago… December 10, 2011. I woke up in the hospital bed at about 6am like normal. Shift change. The night nurse checked on me one last time, and I knew I wouldn’t see anyone again for awhile. Since it was Saturday morning, I knew I would not have the normal troop of medical […]
Better late than never. I posted a bit on facebook today, but I felt like I couldn’t let the date completely pass without mentioning this day. TTTS, Twin to Twin Transfusion Syndrome,is a disease of the placenta affecting identical twins who share a placenta. While this may not directly impact you, perhaps you know someone […]
If you have found this page because one of your twins has been diagnosed with hydrops fetalis caused by TTTS, I am very sorry. The prognosis is bleak. However, it is not over and there are cases in which laser surgery has reversed the hydrops. So, do your research, be informed, seek more opinions if […]
Happy 3rd Birthday to TTTS Survivors Brady and Brenden! Brady and Brenden actually turned 3 last Tuesday, 6/24/14 but I am a week late! I originally shared Brady and Brenden’s story in October 2012, so they were due for another shout out anyway! Here is the original post: Today we share my friend Brandi’s story. […]
One of the best things about the TTTS Community is the level of support, commitment, and dedication we have to each other. Each time I share a story, we hope to spread awareness, education, and hope. TTTS is a monster. No matter what your outcome, it’s a bitch. Plain and simple. Today Shasta tells about […]
This week I’d like to highlight a story of my friend Andrea. Her twins were born too early, and neither survived. Since then, Andrea has been a major part of the TTTS Support Community, and each year organizes the effort to send out Mother’s Day Cards to moms from their TTTS angels. Sharing the stories […]
TTTS Mom and friends raise a whole lot a money! So these moms have set the bar REALLY high for the TTTS community! I thought this was a great story, and I wanted to share it. If you are looking for ways to raise money for the Twin to Twin Transfusion Syndrome Foundation, it doesn’t […]
Most preemies need blood transfusions. So if you’re in Columbia, SC or anywhere near, come on out to the blood drive on Friday, May 16th. I think one of the most amazing things to come out of my journey with Twin to Twin Transfusion Syndrome (TTTS) is the relationship with other moms and to be […]
Congratulations to Brooke and Willis – for raising over $2000 for the TTTS Foundation with their Walk for Life! Today I want to share another TTTS Tuesday story. I was just recently introduced to Bethany, and she wrote a beautiful piece about her sons, Braxton and Connor. Braxton and Connor My name is Bethany and […]
