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She cried and was placed on my chest for over an hour. They were not concerned by her size as I make small babies but chose to get her checked in the Special Care Baby Unit (SCBU), just to be sure all was ok. As my other two daughters had also spent some time there, we were not worried. We joked about the fact that they all like to go in there to give their mammy a rest!

At around 10am we made our way down to SCBU. We were told Lily had had two apnoeas and needed to be put on CPAP to help her breathe. They also pointed out her rocker bottom feet and clinched hands. My first reaction was that she had a physical disability and we would be using Western Care services. It was not long before we found out that would have been the easy option.

Her consultant sat us down and said that when they put her little features together with the apnoeas it looked like she might have Edwards Syndrome. When I asked was that like Down syndrome he said yes, in that it is a chromosome disorder but no, in that she had days to live......

For the rest of my life I don't think I will ever get that moment out of my head. We sat there in shock for a few minutes, then slowly the information seeped in & we fell apart. How could this be happening to us? Why was this happening? He has it wrong. How can she be dying? Our dream of a perfect family was being ripped apart.
Both our families were called in to say their goodbyes as we needed to get Lily to Temple Street, in Dublin, to have tests done. We also had her baptised there in SCBU. At 5pm, after getting myself discharged, we waved goodbye to Lily as she boarded the helicopter, not knowing if she'd still be alive when we got to Dublin. No-one should ever have to say Hello and Goodbye to their new baby in the same day.

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