Hello everyone, my name is Deanna.
Our daughter was diagnosed with Trisomy 18 (Edward’s Syndrome). She was basically given a death sentence at 12 weeks old. Background information: Edward’s Syndrome is a rare but fatal Syndrome that causes your baby to have a lot of various defects with the body, mind and organs. You have a 50/50 chance of your baby even making it to birth before a fetal demise (death), and of that 50%, that gets cut in half again for your baby to be born alive. 95% of those babies born alive passaway in the first few months of life. Medically, insurance wise and even religiously Trisomy 18 babies are deemed “incompatible with life”. That means most all surgeons will not preform surgery on a baby diagnosed with Trisomy 18, insurance does not cover their surgeries, and even religiously they state babies with Trisomy 18 are considered “incompatible with life”.
We went for our 27 weeks ultrasound and they found several holes in the top of her heart, the bottom of her heart, one of the arteries are facing the wrong way and her others are not connected properly. They don’t know if she’ll even make it to the Children’s Hospital. In our state, there aren’t any surgeons who will preform surgery on an infant diagnosed with Trisomy 18. I cry everytime I think about it or it gets brought up. I used to feel her all the time but I don’t feel her as much as I used to and every little movement felt is so precious, it’s such a happy and heartbreaking moment at the same time. You’re supposed to be happy and thinking of all the fun things you’re going to do with your kid, watch them grow, remanice when you’re older at all the silly and amazing things they did, the cute little outfits and their firsts. Unfortunately that hasn’t got to happen and everyday is just prayer we get another with them. I always knew at some point in my life I would be planning a funeral for a family memeber.. I just never thought it would be my baby girl’s. Anytime from now until her due date, August 15th, 2025, could be day we are dreading the most. We have a little bear with a recording of her heartbeat and when we know her final weight, we’ll add it to the bear and stuff it. We want to have her cremated and have a little service for her. She is a fighter and has even given the doctors hope up until our last appointment.
Anything sent is appreciated and thanked more than we could ever put into words. We’ve never done this before and don’t know what all is involved. We are trying to figure out all of the planning, timing and pricing of all this.
