Hi there Littmy
I couldn't see this and not post, though I haven't posted since last summer (am a shy lurker usually) - sorry likely to be long. I found finding other people had been through the same thing the most helpful thing, and Mumsnet was amazing
Last March my baby was also diagnosed with dreadfully severe congentital heart defects - a vsd (not too bad on its own), double outlet right ventricle (wrongly plumbed arterys) and also pulmonary stenosis. There was no chromosonal reason, we were just extremely unlucky.
We decided on a termination, based on the likely survival rate and suffering that the baby would have had to go through for an extremely uncertain outcome, permenantly patched and operated on, unfixable heart. He or she would have been our first baby, conceived after 2 years and about to start IVF. It was and remains the most painful thing in my life, however, and this is the really important bit, for me and my DH, it was absolutely the right decision, and whilst the grief is huge, I have never doubted that. I suppose some people would say that I have to believe that, having gone through with it, but as soon as we had met with the fetal cardiac specialist and knew just how bad things were, we both knew what decision was right for us.
One thing that really resonated that someone said at the time - whatever decision you make you will do out of love for your baby and also for the rest of your family, and thats all that you can ask for. As well as the likely outcome of the baby dying anyway & horrendous suffering on the way, I also knew that for me and my DH a desperately sick child, potentially over many years, would have been unmanagable, and though that feels desparately selfish, the thing about these type of decisions is about getting to some rock bottom truths about yourselves.
I also found it so difficult because the death of a baby, plus the fact that it was a termination are both such taboo subjects, but I never felt judged. Its also hard because its so public, but you do get through it and at some point find yourself on the other side still reasonably whole.
I can't pretend that the termination itself wasn't pretty awful, but if you'd like to know a bit more about what happens do CAT me (hopefully it still works) and I can tell you what happened with me if that would help.
It is a dreadful dreadful time for you and your DH and my heart goes out to you - all the very best for whichever decision you make, and do let me know if there is anything else I can share that would help
Finally, and I am slightly unsure about whether sharing this is the right thing, (so if its not I apologise in advance) but I want to add some positiveness - 3.5 months after we lost our baby amazingly I got pregnant again, and am now due in March. I might have found someone telling me this pretty painful when I was going through it all at the time, but I wanted you to know that there is the other side of all of this, and I'm sure, based on my straw poll of one (ie me) you will be OK whatever you decide to do