I live with this every day. 13 years ago at my 20 week scan I was told there was an echo on the baby's heart but that there was nothing to worry about. I had a three year old boy at the time and this was a much wanted second child. My gp suggested going for a private scan at the fetal medical centre to get a better understanding of what was happening. I was told that the baby, a boy, had transposition of the great arteries. In the womb he would be fine because he was receiving all the oxygen he needed from the umbilical chord but when he was born he would need key hole surgery followed by open heart surgery followed by regular further operation(s) on his heart to deal with scar tissue etc. He had a 59% chance of living to age 16. There was no guarantee of the quality of life he would have assuming he lived to 16 and beyond.
At 24 weeks (it took almost four weeks to get the appointment for the private scan and i needed a few days to make the decision) on Mothers Day, as it happened, I was taken for a final scan where they injected the baby's heart to stop it then induced me so that I gave birth.
The baby was tiny but perfectly formed to look at. We gave him a name and dressed him and ultimately we buried him.
My son who was three at the time vaguely remembers the little brother he lost. One of the biggest factors in making the decision was that I couldn't bear for my existing son to lose his brother. WIBU