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via Simon’s Law.
My Name is Simon 
What is also hearbreaking is that in situations like Simon’s we as parents are putting our trust in the medical staff that we think are there to do everything possible to save our child…only to find out after the fact that t they were not. Like in Simon’s case they were completely dishonest by not discussing their true “treatment plan”….i believe no one but the family should be able to place a DNR and it should never be based on a diagnosis and never kept secret from the parents
My son, Lane, just recently celebrated his 6th birthday diagnosed with Full Trisomy 18. I wasn’t diagnosed before birth, so apparently he slipped right by those educated doctors and accurate tests. The decision of a child’s life should always remain in the parents hands. The same as with families that get a choice in the decision for an abortion. People make the decision based on what is best for their individual family. If a family makes a decision that they want to do everything for their child, then they should have that choice along with the parents that are ok with saying goodbye early with an abortion. I’m going to ask you to go to Youtube and search “Lane; Trisomy 18”, to see for yourself that my son is not a vegetable. He is very aware of the world around him. And…he’s on oxygen because he’s been denied heart surgery to repair his VSD due to the label that is attached to his diagnosis. You see…I didn’t get a choice and I should. I should have been the one to make the decisions for my child. The reality is we will all go one day, and we won’t get to choose when that day is. However, in the time we do have on earth, we should have the right to live the best life we possibly can. And…if a family wants to take care of their child, with whatever challenges they are born with, then that should be their right! Not the medical professionals and definitely not the governments! Also, just because a life is short, does not mean it has no value or purpose.
Your story has really hit home to me. I cried as I read it. I am currently pregnant with an incompetent cervix. There is strong reason (according to my Ultrasound) to believe that my little boy may have a severe chromosomal abnormality (such as trisomy 18 or cystic hygroma with possible hydrops). The Dr has informed me that he will not do the cerclage if I am diagnosed with either of these conditions because he will certainly die. I know that Drs have a lot of experience and knowledge with this but they do not necessarily have the experience of being a loving mother who would never stop fighting for her child’s life. I love my little boy – with or without these abnormalities. Instead of “accepting fate”, why can’t research be conducted on how to help these children survive? If my child is diagnosed with a terminal condition I will never stop fighting until it’s over (for better or for worse). I am more than willing to be a voice for the fight on parental rights. Your story is absolutely devastating. I wish there was something that could take the pain away. I am so grateful to you for standing up and fighting for what’s right. You may just save another child by your good works. Thank you so very much.