By mum, Leigh Dumighan
A neonatologist came in to speak with us and it was all crazy and hard to take in. At 7.40am, our baby boy Warwick came and was immediately placed on my chest. He had dark blue eyes that were staring up at me and curly hair stuck to his head. It was like a dream.
Hours later I was able to see Warwick and it was all encompassing - the noise, the heat and wires covering our tiny, fragile baby.
Then they took him over to the incubator by the window and several people started doing things with equipment.
Three weeks later Warwick got an infection, much like the other babies there. But Warwick's was in his heart. The antibiotics given to him were having no effect and we had to sign a document allowing permission for doctors to try an adult dose of a different drug.
A couple of days later we were asked to see the consultant. Our world was about to crash down. The drugs were not having the desired effect and the next phase would be to transfer Warwick to another hospital where they would administer medication through his scalp.
The drugs weren't working
This was only the start. The consultant went on to tell us that the most recent brain scan had showed that the bleed that Warwick had suffered prior to delivery had continued and his brain was damaged front, back, left and right.
This would most likely mean that if he were to survive the heart infection, he would be blind, deaf, have cerebral palsy, be quadriplegic, unaware of his Mummy or Daddy and not know day from night.
We had to let our precious baby go. No more prodding, poking and pain.
Without discussing anything my husband and I knew what we had to do for our precious baby. I had known three days earlier that Warwick had had enough.
He had lost his energy and fight and when they struggled to put a cannula in his tiny collapsed veins he stared at me and squeezed my finger with the pain. We had to let Warwick go. No more prodding, poking making him endure pain to have no quality of life at the end of it.
We were given a private room to say goodbye and have all the cuddles we wanted. We got him baptised immediately and no one thought he'd manage to breathe unaided for more than an hour. We cuddled him non-stop and it was wonderful to see his face and body without wires and stickers. The only thing he had was an apnoea monitor to alarm us if he stopped breathing. All in all it went off about 18 times in the first 24 hours and we used to tap his chest to remind him to breathe. His upper lip and around his eyes would go a shade of blue.
Without all the wires, we cuddled him non-stop. No one thought he'd last more than an hour
We decided to take off the monitor and make ourselves stand back if he stopped breathing as we were going against what we had decided. If he had had enough, we had to let him go.
We ended up being in that room for eight days and nights! Warwick had stopped breathing more times but used to kick start himself again! The Consultant came to see us and offered to take Warwick back to ITU but we knew he'd give up if he went back into an incubator.
He was loving being on my chest far too much for that! We were told that palliative care at home could be arranged. A fabulous team came to meet us and were on call 24/7. They came to see us every day at home and changed Warwick's NG tube.
But...Warwick was going nowhere
After four weeks at home, the palliative consultant asked if we'd go to hospital to have Warwick looked at as things weren't happening as they thought! Warwick's heart was scanned and there was no sign of any infection. Everything looked fine. His brain still showed damage but all three doctors in the room agreed that Warwick was going nowhere. He would undoubtedly have cerebral palsy but they weren't forthcoming about saying to what degree.
They couldn't understand how he had got rid of the infection? All on his own, without drugs and only 3lbs! They wouldn't dare say anything more!
Fast forward to today - Warwick is a very cheeky five-year-old who understands everything. He has a naughty sense of humour, is very loving and enjoys school immensely. He has spastic quadriplegic cerebral palsy so his muscles stop his movement but he works extremely hard in physio and loves doing it. He is visually impaired but his hearing is over and beyond the norm. He is very vocal and tries hard to get words out.
One thing we can safely say about Warwick - he has a quality of life.He certainly makes himself known. He's going to Liverpool soon to take part in a national cheerleading competition and he now has a little brother who he eggs on to do naughty things!
In March 2014 Warwick won the Build-A-Bear Workshop Champion Children Award in the Tommy's Awards.
Around 60,000 babies are born prematurely every year and Tommy’s funds pioneering medical research into why premature birth happens and how it can be prevented.
"I hope our story gives couples some reassurance that there is light at the end of the tunnel because after 9 miscarriages we have our miracle on the way"
Born weighing less than a bag of sugar over twenty-one years ago, Harriet has come a long way to today, in her final year of University, writing her dissertation on premature infants.
This unique Preterm Surveillance Clinic – funded by Tommy's as part of our research in St Thomas' Hospital, London, has won an NHS Innovation Challenge Prize, for its success in reducing the number of premature births in South East London.
Tommy’s prematurity research centre in London is based at St Thomas’ Hospital, where the charity first began. Opened in 1995, it is the first Maternal and Fetal Research Unit in the UK.