I have seen a few websites where parents post their stories on MKS but it seams that a few of them got childrens that survived MKS... they say that their child is now 18 yrs old and so on, even a girl back home is saying that she lost her last child due to MKS and therefore got her 2 yrs old girl tested and she has it.. This is not what I have been told about MKS. Could it be a similar thing and they got miss informed? We got our testing done at the IWK in halifax and they seam to know what they are talking about, I dont think they would have given a false diagnostic to that girl. Where could I find information that is easy to understand? Is there a way you can select the 2 right genes by getting pregnant by invitro or something?
You'r right about meckel gruber syndrome being 100% fatal within hours of birth,don't believe everything you read on the net.
About avoiding this problem by invitro (and PGD) it is possible, depending on the type of gene that you are carriers, mayo clinic is doing some research that can help you with that , you should contact dr. Peter C. Harris.
Good luck and don't give up hope.
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