I am involved in the Disorders of Chromsome 16 foundation... due to the fact that Noah has MT16 (Mosaic Trisomy 16) ... this is an awesome site, and has been my anchor in Noah's life and especially the pregnancy.
After talking to the genetic DR at about 19 weeks pregnant... he gave Noah no hope, none. He told me "he will be so mentally and physically delayed..." .... that ... "it wouldn't be worth it" ... and he HIGHLY encouraged me to "interrupt" the pregnancy....
I'm sorry... my child did not ask to be born, nor did he ask for this genetic disorder.... why should I punish my child by killing him before even giving him a chance to live.
Yes I am Pro-Life, BUT..... that is for myself. I believe in certain situations it is up to the mother, but.... I am Pro-Life.
Anyway.... I told this DR no, and then he had the balls to look at my now ex husband and ask him ... I was thinking... it doesn't MATTER what he says........ luckily my ex agreed with me.
Anyway.... my Mom is doing a Power Point for school on Noah (it could be on any subject chosen) ... and she sent it to me asking if I would change anything - there were a few things... but then I noticed she also sent me an email with a web addy saying "Did you know about this?"
http://www.genzymegenetics.com/pdf/publications/gene_pdf_publications_mcdermet.pdf
And I hadn't know about it.. at first I thought it was cool, but then I realized that A: it paints the site in a somewhat nuteral light, although making some more negitive comments... like.... #2 in the Conclusions.... "(the stories on the website) my not provide a complete picture for prospective parents" ... they are calling the website biased.... the DOC16 ...
In a way HELL YEAH WE ARE BIASED!!! These are our children!!!
BUT........ is it fair to genetics DRs to paint a picture so grim that you lose all hope for the survival of your child!?!?!! That isn't biased at all. Based on a few medical studies, trained in thought on negitive negitive, negitive. What about the positive things????
When I said to that DR when he was telling me that Noah would be so mentally and physically delayed he would have no quality of life..... and I said "that is not necessarily true" he caught my eye line and bore his eyes into mine, and said "He will be mentally and physiclaly delayed" ...
And although, Noah IS delayed.... he was making it sound like it would be to to the point where he would be at an infant mantality forever.
Noah is mildly delayed - unless pointing out a few things he has trouble with.... with just looking at him.... you may think he's 3 because of his size ... but he is so smart and spunky and he is awsome!
And it just really annoyed me this morning... humph :(
you can never believe what doctors have to say. They are not always right and they do not know what is in your heart. No one said our children had to be perfect for us to love them. All of us are flawed in one way or another, that is what makes us who we are. And if some are flawed more than others, that doesn't make them less of a person. You can just sit back and tell yourself that you made the best descion for your family and enjoy that little one. (even if he is a big boy now!)
ReplyDeleteAfter my daughter had her spinal injury the doctors told us that she would never walk again, that she would be in a wheelchair, and we would have to do everything for her, feed her, etc. Right now almost a year later she is walking, she is so far advanced for her age in language. They did not know what they were talking about! Sure she has some issues with walking and strength, but she is no where near what they predicted. :)
Here's to our wonderful kids!