I have not looked at this picture in 19 months, I put it into a draw and locked it away whilst I struggled to overcome the trauma of what happened on March 16th 2015 and the days that followed. Looking at it now is more painful and raw than you can imagine. I am immediately back in intensive care staring helplessly at my poor baby boy whilst he fights for his life. I can feel the anxiety and sickness return to the pit of my stomach and tears fill my eyes.
I am looking at this photograph and sharing it with you despite all of this because preemie parents need to be better warned of the dangers of RSV and bronchiolitis in preemies.
My son was the eldest of twins born at 31+2 weighing 3lbs 11oz’s, he was discharged from hospital at 35+5 weighing just over 4lbs which to us seemed massive in comparison to the weights he and his twin had plummeted to after birth. As we posed for photographs with our boys in Bay C also known as the departure lounge of neonatal we truly believed the worst was behind us and our strong little miracles who had just needed to feed and grow in NICU would be absolutely fine in the outside world.
We were of course given leaflets on RSV and bronchiolitis as we left and we followed the guidance of hand washing etc. Visitors were kept to a minimum and those who did come were vetted for colds and coughs, made to wash their hands and use anti-bacterial gel before touching the boys and we felt confident that everything would be fine, it wouldn’t happen to us.
We had been home for just 10 days when twin one stopped feeding. He stopped waking up and eventually he couldn’t be woken up, he looked pale and mottled and his breathing was laboured and shallow. Instinctively I knew something was wrong. I did my check list of symptoms that I had been given on discharge, not feeding check, unresponsive check, a fever? my baby was like ice to touch, it couldn’t be RSV.
I called NHS Direct for advice but whilst on the call I saw my beautiful boy was stopping breathing for long periods of time and he was almost grey. I scooped him into my arms and rubbed his chest and arms to make him breath.
I jumped into the car cradling him in my hands, his body was still so tiny and thin and every inch was purple and mottled. My dad raced off the drive and I knew we would never make it to A&E, he seemed to be slipping away in front of my eyes. We rushed to the doctor’s surgery and I forced past people into a side room where his tiny up to 5lbs baby grow was cut from him, he was put on an oxygen mask and the ambulance arrived.
My legs were like jelly and my heart was racing, my palms were covered in sweat and I could feel a weight of fear upon me and all around me, it was crushing me and forcing me to keep standing all at the same time. I shook with fear as I walked next to the bed he was on and out to the ambulance.
When we arrived at A&E my poor baby boys temperature was just 32.5C and he was declared as having a hypothermic temperature something I had never heard of in my life. I could see the look of panic on the doctors faces as they tried to reassure me but I knew this day was not going to end well.
Over the next three hours they progressed him from nasal prongs to low flow to hi flow to CPAP and then finally the moment I had been dreading, ventilation.
I stood next to his heated crib in intensive care and stared at his tiny sedated, ventilated, swollen, body, his face covered in tape, his arms and feet full of drips and cannulas and the continual pinging of monitors ringing in my ears.
I sat without moving longing him to live, praying he could fight whatever was hurting him. I pressed my face against the plastic of his crib just as I had done during the weeks spent in NICU and time stood still as I willed with every ounce of my soul my miracle preemie to make it through. I could not, I would not lose him now.
He lay there without making even the slightest of movement and as I stared at him it hit me that his stillness made it seem that he was no longer there, that he had left me already and I remember so clearly, too clearly the hot terrifying fear that rose inside of me and the helpless agony of a mother unable to protect her child yet again.
After numerous tests including a lumber puncture to rule out meningitis he was diagnosed with bronchiolitis. We had been so careful yet he had caught a chest infection from the one person I couldn’t vet or exclude from our home, his big brother.
The leaflets and check lists we were given that day in Bay C as we waited to be discharged had helped me know my baby was unwell but they had not helped me recognise an RSV infection. Every leaflet referenced a fever not a low temperature yet when we were admitted to intensive care I was told a hypothermic temperature can be common in preemies with RSV especially those who have such low weights still.
We were extremely lucky and after three days of praying and willing and hoping our baby boy was finally well enough to be woken up and extubated. It took just under two weeks for him to regulate his temperature before we were finally able to bring our tough little miracle home from hospital for the second time before he even reached his due date.
Things could so easily have been much different and I live every day bearing the scars on my heart, soul and mind of what I witnessed that day. There is no way to avoid RSV or bronchiolitis but we can make sure we are completely aware of ALL of the signs and symptoms to help ensure other mothers can react quickly and hopefully avoid experiencing what I did.
If you have or know someone with a preemie this cold season please share this so they can understand the potential impact of RSV, bronchiolitis and hypothermia on their baby.