Today is TTTS Awareness Day. My Lucas and Caleb were lost very quickly to Twin to Twin Transfusion Syndrome. Awareness and Education about TTTS is very important in diagnosing and fighting this disease of the placenta and saving the lives of identical twin babies. Doctors and mommies alike should be aware of this disease, the symptoms, and the different treatments AS SOON AS an identical twin pregnancy with the twins sharing a placenta is found. I will be lighting a candle for Lucas at 5:10pm and one for Caleb at 5:15pm tonight.
I knew about TTTS from February 18, 2010. The day I found out we were having Lucas and Caleb. I came across it in my crazy search about twins. I came across the TTTS site and scanned the information. I saw that a difference in weights and/or amniotic fluid was a symptom to really watch for. I put this in the back of my mind, trusting that my doctor was also watching for this from the beginning.
At each appt, the boys weighed very nearly the same, and the amount of fluid was similar. At my 22 week appt, we learned that BOTH sacs had excess fluid. I searched everywhere and I couldn't find a correlation between both sacs having excess fluid and TTTS. I went to the hospital on May 24th due to Braxton Hicks contractions that had become pretty consistent and were coming every 3-4 minutes. They kept me overnight, and released me the next morning. I had gained some weight pretty fast, but both Lucas and Caleb looked great and there was visually no signs of TTTS.
On Saturday, July 28th, I was taking a nap, rolled over and felt a gush of water. Not like gallons, but more like I may have wet myself. After a few hours, and seeing a little pink, we decided to head to Labor and Delivery to be checked. I will NEVER forget being told that one of my bags had ruptured. But, the babies weighed within 3oz of each other, and there seemed to be plenty of fluid in both sacs. Bedrest for the remainder of my pregnancy was on order. And no mention of TTTS.
On Monday, May 31st, at 7:30 or so, I started having real contractions. They came in to check Lucas and Caleb. They brought in an ultrasound machine to find them. We saw them both, moving, or so we thought. At around 8:30pm, we learned Lucas had gone to Heaven. I was diagnosed with early acute TTTS. The perinatologist said she had NEVER seen TTTS hit so quickly this early in a twin pregnancy. My OB said the same thing over and over again to me throughout the following weeks.
Both babies were born 4 hours later by emergency c-section. Caleb was already "stuck", or shrink wrapped, by his amniotic sac. When he was born, his left leg had been without circulation for some time and his kidneys had already shut down. He also suffered a severe brain bleed. 25 hours after entering this world, he grew his wings and left, taken by TTTS also.
I know I was where I needed to be, Lucas and Caleb were carefully watched, and TTTS still took them. I have had TONS of guilt off and on throughout all this. I often wish I had taken the 15 questions off the TTTS website and asked the Ultrasound techs those questions at every appt, if that would have saved my babies. I know this was out of my hands, but the mommy part of me feels I'm to blame at times. (Not near as often as it used to be) But what keeps me sane is knowing that I was in the right place, being monitored, and there is nothing else I could have done for my sweet Lucas and Caleb.
I have made some really amazing friends through this TTTS journey and the one thing that really sticks out is Awareness and Education. And I know that when I hear of a mommy carrying identical twins with a shared placenta, I will congratulate her, then ask her to check out the TTTS Foundations website. And I will ask her to please take it seriously. I don't want to be Doom and Gloom, I just want her to know how REAL this really is, and how when you beat the 0.4% of conceiving identical twins, the 20% chance of TTTS isn't so large.