trisomy 13

[gawani]

i have two little girls who are totally healthy. then, i had a miscarriage at 11 weeks. took me two years for some reason after i had a D&C done with that pregnancy to get pregnant again. finally did and everything was going along so smoothly! we had a ultrasound done and found out through that and amnio that we are having a trisomy 13 baby! this was a total shock. and, is a shock still everyday. i am now 32 weeks along and the doc thinks that the baby has a 70% chance of being born alive. i am so scared to go through labor with this in my mind knowing that the outcome will not be a good one at the end. i am scared of looking at my baby and seeing him pass or struggle. he has a translocation of the 13th and 14th chro and docs wanted to do genetic testing on me and my husband but we have said no because we have two little ones now that are totally fine so we know that it does work for us. i asked the genetic counselor what the chances in this happening again was if let's say i carried a balanced translocation of the 13th and 14th chro she said it would still be 1% chance of it happening again. we so wanted a little boy too! i just want to know if anyone else has had this happen and if they were able to find the courage to try again and had a healthy baby?

[gracieb3]

My heart and prayers go out to you and your family.  But I was wondering more about your post.  Who is the he that has a blanced translocation of 13& 14?  Only because a balnced translocation is not an issue for the person with it..only for when they go to reproduce.  Trisomy 13 on teh other hand is most often not compatiable with life but there is a website called living with trisomy 13 that shows many people who are indeed able to sustain life but the quality and severity varies for each.  
And I was concerned for the children you do have when you and your spouse declined the genetic testing.  If you are or if your hubby has a balanced trans therefore you are a carrier.... then this would tell you whether or not to test your other children.  I can tell you that it may be important to them to know this as soon as they are able to understand reproduction.
I speak as a mom who learned after 2 m/c that I had a balanced translocation and that my hubby was genetically normal.  I went on to have a wonderful 3rd pregnancy and that child was tested and in a way beat the odds as my child is also genetically perfect.  But what i know is that I will continue to have miscarriages, I too have the risk of carrying to term a trisomy or losing that baby along the way... but most importantly i know that i will have all of my children tested so that i can tell them the truth about themselves when the time comes.  I know this because I shared this information with a sibling.  And they too have the same translocation.  And they & their spouse are grateful to know, especially since they were not naive about increased miscarriage rate and they were better prepared when they lost their first pregnacy.  It is a struggle but it is one to be better aware of than not.  I do hope you reconsider testing your children that you feel are fine should the test for you and your husband reveal anything.  And may this genetically abnormal baby have been blessed to have been cared for by you even if the time was short.  God Bless you and yours.
Gracie