3.5 weeks post-TFMR due to hydrops
Hello everyone,
I’m about 3.5 weeks post-TFMR of my sweet baby boy due to hydrops at 22 weeks. This has been, without a doubt, the hardest time of my life. I cry every day. I see him everywhere, and I can’t stop thinking about the future that was taken from us so abruptly. Life can feel incredibly unfair.
My baby had hydrops (fluid around the lungs, abdomen, and under the skin), but no other anomalies were found on ultrasound. In fact, everything else looked perfect—his heart, liver, kidneys, brain, growth, and movement were all normal. Because of this, I’ve been agonizing over my decision to terminate.
We were running out of time to access TFMR in my country. Otherwise, I would have needed to travel abroad for a D&E, which my doctors did not recommend. The only other option would have been to wait and see how things progressed—likely facing the possibility of his heart stopping in utero or delivering him knowing he might only survive a very short time before dying in my arms. It felt like an impossible situation.
We are still waiting for genetic results (WES) and autopsy results. The microarray came back clear, and this was also a pregnancy from a PGT-A tested embryo, so chromosomal issues were considered unlikely.
I guess with this post I would like to ask if anyone else here has had to terminate a pregnancy due to isolated hydrops, like in my case, and how you have come to terms with it.
I would also be grateful to hear from anyone who has gone through a TFMR in a situation where the diagnosis was uncertain or “grey”—where there was no clear cause, and where the condition might have resolved but was unlikely to.