Alex was born eleven weeks early weighing 1lb 6oz/620g

Three weeks prior to Alex’s arrival we discovered, via a routine scan, that his arms and legs weren't growing properly. A specialist told us our baby had Achondroplasia, which is a type of dwarfism. However, thankfully, a test confirmed that Alex didn’t have this condition at all; we were so relieved and I began to enjoy my pregnancy...
At 29 weeks, I woke up in the middle of the night, to go to the toilet and found my waters had broken. We all dressed and went to the hospital. The midwife wasn’t sure and asked if I had wet myself. She examined me, my waters had indeed broken and it looked as if all the amniotic fluid had gone.

Alex’s heartbeat was monitored and we were told that I would have to be transferred to Nottingham Hospital, since the neonatal unit at Leicester General Hospital was full. However, Alex showed signs of distress and a decision was made to deliver him immediately by emergency caesarean.

Because I had lost all the water surrounding my baby and they didn’t know how he would be, the doctors felt it would be better for me to have a general anaesthetic and therefore not be awake to see him being delivered. I had a classic C section (from the belly button down) since they wanted to be able to lift him out rather than tug and pull him out in the usual way.

My husband was by my bedside when I awoke, he had been to see Alex and had been told that he would probably not survive as he was too small. I desperately tried to wake myself up properly so that they would let me see him. I was taken down to the neonatal unit and wheeled up to an incubator where my tiny son lay. To be honest I felt very numb, I was in shock I suppose. I remember being told things about Alex by the neonatal staff but I don't remember what they said.

This was the beginning of a five month roller coaster ride, up and down, some good days, some bad with little progress. Alex was in Intensive Care for nine weeks, then he was transferred to High Dependency and then back to Intensive Care when he stopped breathing because of a hernia.

He was transferred to Leicester Royal Infirmary to have an operation to repair hernias on both sides and then back to Leicester General to recover. We saw so many babies come and go; which was hard as there appeared to be no light at the end of our tunnel.

Alex was oxygen dependent for most of the time he was in hospital and had to have two courses Dexamethasone, a steroid which improves the lungs, making it easier to breathe. Finally he came off oxygen and learnt to feed without the naso gastric tube.

Alex was discharged three days before his sister's 6th birthday party. What a party we had. However, this was short-lived; he wasn't feeding properly and not taking enough milk for his weight. Back in hospital we were told Alex would have to be naso gastric fed again. I learnt how to site the tube and everything else I had to know about having an NG fed baby.

No one could tell us how long it would take for Alex to learn to feed himself but eventually at 2 years and 2 months old he came off the feeding tube. His sister was a huge influence on getting him to eat. One day she was sat in front of the television with a packet of crisps, he asked for one, sucked it soggy, put it back in the packet and asked for another one - we were so pleased.

We are so grateful to all the wonderful nurses, doctors, specialists and consultants who have helped us and are still helping us. Nothing has been too much trouble for anyone.

Special thanks to Lindsay & David for sharing their story with us.
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