Even as a tiny baby, Elliot was full of life (and quite a handful) so when overnight he became very sleepy and lost interest in feeding we knew something was wrong.
He was just three weeks old when it happened and it was incredibly shocking how quickly he went from being a healthy baby to seriously ill overnight. In the evening Elliot had seemed his “usual self” (as much as we could tell in that short time), feeding most of the evening before falling asleep around 11pm. He woke up in the night and seemed a bit unsettled and was sounding slightly nasal in his breathing. He didn’t have a temperature so we thought he was just tired and snuffly so we settled him back to sleep. When he woke in the morning and didn’t want to feed, we took him straight to the doctor who told us to take him to our local hospital in Ealing. On our way, Elliot’s condition deteriorated rapidly. He looked very pale and mottled and, while being checked by the hospital doctor, his eyes suddenly rolled back in his head. It was terrifying.
Immediately he was taken into another room and there were twelve people surrounding him, all trying to stabilise his condition. He was wired up to several machines while a doctor explained he had sepsis and would need to be transferred to the intensive care unit at St Mary’s hospital. It was the most devastating shock, we felt desperately scared for our tiny boy who we were only just getting to know but already loved more than anything.
The ambulance journey passed in a blur, though I do remember the exceptional kindness and sympathy of the CATS (Children’s Acute Transport service) team that transferred us at St Mary’s.
Seeing Elliot in the intensive care unit was utterly heartbreaking. He was pumped with lots of fluids which made him look much bigger than he was and was laid out straight on his back. He was hardly recognisable from the curled up newborn we were used to holding – it hurt to look at him. The amazing staff at St Mary’s couldn’t have been kinder or more supportive. They helped to involve us in the little ways we could try to care from him, like placing my clothes with my smell around him, as we desperately wanted to look after him.
The COSMIC charity was a great support throughout. The information leaflet they provided explaining what happens at PICU was very helpful as we had no clue what to expect. We were also extremely grateful to COSMIC for arranging a local hotel for us as we were too dazed to plan anything. (I’m very pleased to hear that COSMIC are raising funds to create on-site parents accommodation as all parents want to be as close as possible to their children at this awful time.) I was expressing milk around the clock to maintain my milk supply and frequently shuttling bottles to the hospital to be frozen for him.
After an excruciating 48 hours of not knowing Elliot’s diagnosis or prognosis, we were told Elliot had the very serious group B strep bacterial infection, and suspected bacterial meningitis. The consultant explained he would survive but that there could potentially be brain damage and life altering after effects – only time would tell as he developed. Even now, I don’t know how we got through that time. It was impossible to process all the potential ways our son might suffer on top of all he’d already been through.
After a week in intensive care, he became stable enough to be transferred to the paediatric ward for a further week before we were discharged for treatment at home. It was a huge relief when he was brought out of his coma. He quickly picked up feeding and it felt amazing for us to be able to care for him as parents again. It was a tough road to recovery as Elliot was very unsettled in the months that followed and we were very anxious about his development, particularly as an MRI scan indicated some signs of damage to his brain.
Thankfully, so far we have been incredibly lucky with Elliot’s recovery. Elliot is now two and a half and is developing brilliantly with no apparent signs of any developmental difficulties so far. It is an absolute joy to see the happy boy he’s become – he is full of energy and curiosity about the world. We’re incredibly proud of him and every milestone he achieves. Now that Elliot’s talking, he is very chatty and it gives us huge pleasure to see his personality coming through more and more each day.
We cannot ever thank enough the amazing staff at PICU and the great work that COSMIC does to support families in such terrible circumstances.