Tonight, after a rough day with three kids, my husband said, “Hey, do you remember I told you that [a coworker’s wife’s] coworker and his wife were going through TTTS?” Um, no. I hadn’t heard about it. I guess the coworker’s wife offered to give them our information, but I assume they didn’t take it.
These people, who live in our county, presumably, were diagnosed with TTTS just over a month ago and were told that surgery wasn’t an option. So they did nothing. And she delivered the babies within the last week, allegedly at full-term. One of the babies died as a result of TTTS. The other baby and the mom both had major complications and almost died.
Upon hearing this, I burst into tears. Why? Because maybe I could have helped them. Maybe I could have helped them find the right doctor who would have done something differently and saved that precious baby. I don’t know WHY they were told that surgery isn’t an option. I know that when I had the laser surgery, we were a few days past the typical cut off, which is 26 weeks. Now, at 26 weeks, the babies are technically viable and could be delivered if that’s the only option. With my babies, the damage was so severe that one or both may have died if they were delivered then. I had one of the most skilled TTTS laser surgeons in the world perform the surgery, and we are fortunate that it worked. So if this mom was past the point where surgery was an option, the babies should have been viable. There’s a point where the best option is delivery. Who was her obstetrician or MFM? They should have been monitoring her like crazy so that the babies could be delivered at the first sign of any trouble. Maybe they were. TTTS can progress so quickly. I just hope they were as informed as possible.
I know shit happens. I know you can’t control everything. I know that it’s tough to be your own best advocate and tell your doctor what you really need. But now I know of a network of parents whose lives were forever changed by TTTS. These parents, including me, will do anything to prevent another family from the heartache that we’ve experienced. They are a wonderful resource for those who are experiencing TTTS in their pregnancies and parents who are living with the outcomes — positive, negative, and everything in between.
This family’s loss shook me. I know how fragile the situation can be, but just last night, I posted on Facebook a photo memory from this time last year — when my belly really popped, which was one of the first signs of TTTS that I experienced. I asked my friends to share my story and to give my information to anyone they know who is having twins, especially monochorionic diamnionic twins. I want to help. I know that even with all the issues that our Baby B has, we are the lucky ones; she’s here in our arms. We don’t know what her life will be like, but she has one. So many have lost one or both of their TTTS babies. I want to support the TTTS Grief Support Team as much as possible. I want to be a resource for other moms. I need to spread the word about TTTS because of how much it has rocked my world. One of my missions in life (other than raising healthy, upstanding children) is to spread awareness and do whatever I can to prevent this disease from ravaging other families.
Please, share our story. You never know who you might help. If a friend seems reluctant, give me their information, and I’ll contact them. I don’t care about being pushy if it might save a life. Hug your babies tight; there is nothing more precious.
To read about the rest of our TTTS journey, click here.