Rare chromosome deletions and TFMR Decisions

My heart is so heavy today. I want to know if anyone else had a rare chromosome diagnosis from an amino and you didn’t feel like the geneticist or doctors did enough research to give you an accurate prognosis. My genetic counselor told me that the results could be mild to severe for my ring 21 and monosomy 21 diagnosis. But the reality was she failed to do her own research until I had more questions and she took it to the MD. My baby’s deletion is the largest ever. No other literature shows this deletion spanning that much of the chromosome. The MD told her that there is no chance of mild and it is actually severe diagnosis but reality is there were no normal cells. I just don’t feel heard because there are little to none cases on this.

Anyway my husband and I came to the conclusion to TFMR instead of waiting for the devastating news down the line. Sorry if I am just blabbering but I just hate that we all had to make this decision.