Four years ago my beautiful daughter's Lucy and Olivia came into the world weighing a tiny 1lb 12oz and 1lb 9oz, arriving early at just over 25 weeks old. I'll never forget the night our girls were born.

Thankfully, both babies came out crying - but they were immediately whisked away. The following hours, days and weeks were a rollercoaster of fear and worry. We didn't know from one hour to the next whether breathing difficulties or infection might claim their tiny, fragile lives. We are well aware that we were lucky.

During our two months in intensive care, five other babies died. I don't think people realise how often it happens, babies being born at 24 or 25 weeks, and how hard it is for them to survive.

Lucy and Olivia had to stay in hospital for another two months until their due date. In the first week, they both did well, but after that, one would be up and the other down. Lucy was ventilated for one day and then supported with oxygen. She was able to breathe on her own after just one month. But Olivia stopped breathing several times and needed life-saving treatment. The impact on families of having extremely premature babies is shocking - and lasting.

Even now, I worry about the risk of infection. The fear of them dying hasn’t gone. Babies are surviving but not much is known about the long-term impact of prematurity. It's so frightening for parents, which is why it's reassuring that more research into prematurity taking place.

Gemma gclark@action.org.uk Yes Yes