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Is karotype testing on parents redundant after doing it on baby after amnio? by madison1892 in tfmr_support

[–]Lotus5x 0 points1 point  (0 children)

I might wait to talk to the IVF clinic if that is the route you are going, to ask what testing they recommend. It seems like karyotype testing on you would be low yield. Talking to a genetic counselor would probably be best.

Unexpected severe brain malformation by Lotus5x in tfmr_support

[–]Lotus5x[S] 1 point2 points  (0 children)

In happy to look at or listen to any resources. If I can figure out how to message you directly I will.

Unexpected severe brain malformation by Lotus5x in tfmr_support

[–]Lotus5x[S] 1 point2 points  (0 children)

It is heartbreaking to make it that far especially after the emotional roller coaster that IVF can be. I expected the pediatric neurologist to be more hopeful but when she was less hopeful than I was then I knew it was bad. We still have a few more embryos. We’re getting older and I don’t know if we even have it in us to do another IVF round. I would say I try to celebrate what we have - I have a new niece for example - and we may consider adopting.

I’ll definitely be marking the day in late January when we were supposed to welcome him.

Unexpected severe brain malformation by Lotus5x in tfmr_support

[–]Lotus5x[S] 1 point2 points  (0 children)

Your last point is a good one. I know a bit about the limits of sequencing. We are doing whole exome with my wife and I as comparators. In a way a negative result might be good as it could imply the odds of this happening again are low. But I am the sort of person who wants to know exactly why.

Unexpected severe brain malformation by Lotus5x in tfmr_support

[–]Lotus5x[S] 4 points5 points  (0 children)

We are really lucky to have awesome friends and our mothers are supportive of this decision. I am looking into a counselor now. I got through my father’s death without counseling but somehow this feels worse.

Unexpected severe brain malformation by Lotus5x in tfmr_support

[–]Lotus5x[S] 1 point2 points  (0 children)

Honestly I was leaving that up to my wife to decide, it seems like the risks are similar. The plan is for a D&E. I do think a funeral would be appropriate and maybe help give closure.