December 7: World TTTS Awareness Day
See this tiny scar on my stomach? It’s smaller than the tip of my pinky fingernail.
That’s the thin line between life and death in our family.
Four years ago we heard terrifying words. Your baby has a 60% chance of being born alive. His twin has a 10% chance without intervention. It still takes my breath away to remember sitting on that exam table, hearing the diagnosis: your sons have Twin to Twin Transfusion Syndrome.
TTTS is a terrible, undiscriminating disease that attacks families every day. In Canada, at least 250 sets of twins are affected annually. With this disease, abnormal blood vessels allow twins’ umbilical cords to connect, resulting in one twin taking blood and nutrients from the other. There are several stages and complications, but basically one twin suffers decreased blood flow and bladder activity, while the other twin’s heart is strained by the excess he consumes.
We were diagnosed with TTTS the day after we found out we were having twins. Within 24 hours we had flown more than 1,500km and were scheduled for a surgery at 20 weeks pregnant. That in-utero procedure saved both our boys’ lives, and saved us from a lifetime of heartache. Twelve weeks later our boys arrived, small but mighty. They bring joy (and frustration and sticky fingers and all the other stuff) to this world every day.
We need more TTTS survivors, more awareness, more early intervention and monitoring. December is Twin to Twin Transfusion Awareness Month; December 7 is World TTTS Awareness Day. My challenge to you on this day is to encourage pregnant women you know to seek an early ultrasound. If it shows twins (or higher order multiples), be sure to suggest that they learn about the risks associated with TTTS. There is no cure, but there are treatments and procedures that can improve outcomes – but they only work if everyone knows to be watching for symptoms of the disease.
My final thoughts, whenever I reflect on how lucky we were to survive TTTS, is with those who are taken by the disease. To those families, please know that your babies are remembered. They are honoured. They are loved.
For more on our family’s journey with premature birth, time in the neonatal unit, twin-to-twin transfusion syndrome, and raising twins, check out these posts.
You might also want to read our story shared by Today’s Parent.
For parents seeking support, please visit the website of the Canadian Premature Babies Foundation. You might also want to take a listen to their podcast, hosted by me, Jenna Morton, of Pickle Planet.