Kirsten & Gareth’s Story (Tom’s mum & dad)

Tom was born at Royal Oldham hospital 24 weeks and 5 days, he weighed 1lb 7oz, he was taken straight to NICU.  I was totally unprepared for the neonatal unit.  I had never seen anything like it, so many machines and beeps and incubators it was terrifying but strangely calm. I was even less prepared for seeing Tom for the first time.  Underneath all the tubes and wires was this tiny little baby, his skin was red and see-through, his eyes were still fused shut. It was a shock!  Despite him being so early and small his first few days were pretty stable.  The nursing staff taught me how to do cares, but I dreaded them asking me if I wanted to change his nappy because I didn’t.  I was too scared to touch him.  When he was a week old they discovered he had a shadow on his right lung.  The doctors weren’t concerned straight away as Tom was stable and improving, but after a few days Tom started to go downhill and he had become distressed. The doctors realised that whatever the shadow on his lung was, it was causing major problems and from ultrasound scans it was clear it was getting bigger.  After a week, Tom’s pressures on the vent were going up and so were his oxygen requirements. The shadow on his lung was a growth and was stopping his lung from working properly.  Everyone was baffled by it and the decision was made to move him to St Mary’s.  Tom was booked in for surgery to remove what was thought to be a CCAM on his lung, but this was cancelled as the day before the surgery it was noted that the shadow had started to disappear. Twelve days later we returned to Oldham. Tom began to have a fairly smooth ride at last, we had many setbacks and he gave me and the nurses’ lots of scares. The nurses and doctors became our family and the unit became our home.

The days are long for parents on the unit and it can get very tough and isolating.   I found peer support got me through the day and I made friends with lots of other parents.  I was able to room in for several nights with Tom, to establish breastfeeding and learn to get to know him properly. This was so valuable for me and I felt well supported and ready to take him home. Tom came home after 127 days in neonatal care, he was on home oxygen but we were prepared for that and it didn’t faze us. Tom is 3 now and he is doing well, he is a little behind but he does things his way. He has a fantastic personality and is an absolute handful. I could never find the words to thank the people who were involved in Tom’s journey. We are eternally grateful that we were given the opportunity to watch our amazing little boy grow up.  Without the wonderful neonatal teams he would not be here today.