Hi all,
I've read a few threads on here about people dealing with TTTS but I couldn't find one that matched my experience more similarly:
Basically, I am currently pregnant with identical twins but was diagnosed with Twin to Twin Transfusion Syndrome (TTTS) exactly two weeks ago today, when I was 22 weeks pregnant. The good news is they caught the syndrome relatively early, but still at what they considered an early stage of the pregnancy, so not ideal and intervention of some sort was needed.
I was advised that laser ablation surgery was the best option and had it the very next day. Scans both the morning after and 5 days after the procedure showed that the twins were coping well with it, and that it had improved blood flow to both twins so early assumptions were it was going well.
Fast forward to today, I'm now 24 weeks but another scan to check progress today has shown that unfortunately it looks like the syndrome hasn't been fixed. There's good signs - both babies are active and have a good blood flow. The smaller, donor twin continues to have fluid in the bladder. However, fluid has risen again around the bigger twin to an almost dangerous level, and no fluid gains are present around the smaller twin yet, meaning that almost definitely the syndrome is still active and hasn't been sorted, so to speak.
I'm going to be monitored over the next few days, but the doctor feels another round of surgery is going to be required, as most likely scenario is that some blood vessels were missed during the last procedure, despite their best efforts. I'll likely get the surgery again later this week unless some sort of miracle happens.
It's all very terrifying and quite frankly I'm not sure I can cope with another round of surgery and the continued uncertainty, it's exceptionally difficult and I feel sick to my stomach with worry. The care I've had and support from my partner and family has been out of this world, which I'm so grateful for but I'm also beyond scared and unsettled at this point.
Has anyone here had experience of TTTS with multiple surgeries? I know right now it seems it might be our best option (other options are to do nothing, which will almost definitely end badly, or to terminate the pregnancy) but I just can't see this ending well and my positive energy tank is essentially empty at this point...does anyone have any experience of this or heard anything? Any comments welcome and apologies for the long post!