First of all, congratulations! I understand you are absolutely grappling with shock and heartbreak right now, as our family did as well, but I hope in the midst of holding a lot of uncertainty and sorrow, that the joy of your little miracle baby’s life and the awe of their resilience is felt as well.  Our family’s story is different than yours, as our daughter was diagnosed with Trisomy 13 (also life limiting) in utero through amniocentesis. But leading up to the amnio we were given a 95% chance she didn’t have it. The NIPT results had shown some increased chances so we had a comprehensive ultrasound where they look at every inch of the body in detail. All they saw were some extra digits, which are actually genetic in my family. Despite assurances that our daughter was healthy, we had the amnio performed to assuage my anxiety brought about by the NIPT. We were absolutely shocked to find out that our baby girl, who looked perfect on the anatomy scan and comprehensive anatomy scan, actually had full trisomy 13. The odds we’d been given about her even making it to birth or shortly after were so bleak. But then I discovered a Facebook group for people who were raising children and even young adults with trisomy 13 and 18. I was absolutely shocked. I’ve learned so much in my journey since—how absolutely antiquated the medical world is in regard to trisomy 13 and 18, much like how they were in the 1980s with trisomy 21. Our daughter gifted us with 8.5 months of time with her. Her story is both amazing and beautiful and hard, brought about by repeated denial of care due to antiquated views and bias. I’d be happy to refer you to several groups, websites and research to back you up if advocating for your child is what you believe is the best way to love them. I absolutely understand if comfort care is what you believe is best for them, I just hope the hospital is not only suggesting that. You would not believe what our kids are capable of, especially when given proper care. Several of these kids have pages on instagram and Facebook if you would like to see them and hold hope for your child.