Nicole, have you been told that it is a palliative and not repair pathway? I would hate to think you had this thought from me and not your cardiologist. There is such a great difference in the outcome and quality of life; as you can see Mistyfying's son and mine have quite different stories.

If you have been told of the longer term needs/issues that can make a significant difference to your decision. Also, the best information they can give you is based on todays technology. So my sons life expectancy is too short (for me to be comfortable with) but is based on todays ability not on what medical sicience will be able to offer us in the next decade or two. We have stored our sons stem cells from birth to be used for him when the science has the abilty to grow another heart for him.

I am not pro-life and would not dream of trying to sway you either way. I just am trying to offer you a longer term view - such a hard thing to get a hold of when you are confronted with the imediacy of your babies need for surgery soon after birth and time in hospt etc.

The last few years have been incredibly hard for us and at the same time as we have experienced great and terrible sorrow and despair we have also experience overwhelming joy and thankfulness for things that may appear trivial to others.

Rachel