Saturday 22nd December 2018 was the day we were blessed to have a second beautiful baby boy – Ezra Jax Johnson. He was a little on the small side (5lb 6oz) which at first we were concerned about but we were told he was a healthy baby, feeding well and we were at home just in time for Christmas Eve.Things were going well, Ezra fitted in to our lives so perfectly and our eldest son, Coen was very proud of his new baby brother. Like all newborns, Ezra fed every 3-4 hours until he was around 10 days old he slept for 6 -7 hours. He was very alert when awake and overall a happy, good baby. With it being a cold December/January we didn’t venture out too much, but we did have the occasional trips to the park, midwife visits, but mainly our time was spent at home with visitors all wanting to meet our new addition. Ezra was gaining weight which was a relief because of his low birth weight. Ezra weighed 6Lb at 10 days old, the day we were discharged from the midwives. 

The evening of Tuesday 8th January 2019 - Ezra was a little off. Wasn’t feeding as well as he would normally, but he was still taking enough milk. He was harder to settle than usual which we put down to wind/colic or general new baby things. After a few hours of sleep we heard him wake – not screaming out too much but awake - ready for the next bottle, we thought. Again, a poor feed and harder to settle back down. His nappies were wet and he didn’t have a temperature. The night got worse where by Ezra would only settle on either Ben or myself – I couldn’t put him down. Again I thought, general newborn baby thing, we’ve had it too good so far but I will go straight to the doctors in the morning to get him checked over. After a rough night we tried a feed again at 7am which was when Ezra was sick. This was when I thought somethings not right – a cold perhaps? He appeared unhappy but quiet, not in a lot of distress just a grunting/moaning like sound before he went back off to sleep. The midwives said it could be something like colic but because of his age to get an appointment with a GP. At 9:10am I had a call back from a doctor who invited us to come in and see her at 10:20am that morning. We all went along to the doctors thinking we’d be back home with a dose of new parent syndrome but that very much wasn’t the case… 

I remember the moment I looked at Ezra when we got into that doctors surgery, he suddenly didn’t look well. Pale, red edges around his eyes. This had developed from leaving our house at 10am and getting to the surgery at 10:10am!! I undressed Ezra so the doctor could examine him whilst asking me questions. She asked if the mottled skin was a new symptom – it wasn’t Ezra had had this on and off since birth and I’ve seen it before with Coen and other babies usually when they are cold. She agreed with me and said she can see he’s not 100%, but didn’t know what so was ready to send us home until… I went to dress Ezra and he grabbed my thumb tight, he would not let go and this was when he had his first seizure. I seen the look on the doctor's face and I knew my baby was sicker than we all thought. She stayed calm and said to be on the safe side we should go and see a paediatrician at Bath RUH. So we went to pack up our things and leave which was then when Ezra’s right leg also began to shake - he was having another seizure. It was panic stations from here…The doctor was on the phone to the ambulance service and that’s when I heard the words “I have a three week old baby here with suspected meningitis”. I felt numb, but calm as I never really knew how serious meningitis was or how quickly it can develop. I’d always related a rash to meningitis yet Ezra didn’t have one. Ezra was given an antibiotic injection as a precaution. He also had a sedative to calm the seizures. After over an hour waiting for the ambulance to arrive, myself, Ezra and my sister made our way in the ambulance to Bath RUH. I held him tight to my chest to keep him warm as he was very cold to touch at this point. His oxygen levels dropped so he wore an oxygen mask. Seconds after arriving in the A&E department, Ezra was taken from me, the nurses and doctors undressed him, they examined him, took blood for various tests and gave another lot of antibiotics. I remember looking at the clock, it was now 12:30pm, Ezra wasn’t getting any better, he was getting worse. 24 hours ago he was showing no signs of sickness! A doctor explained the bloods were being taken to test for infection. The first lot of bloods would be back within the hour and this would tell whether this was an infection, if not an infection then a possible neurological defect. I could sense from the doctors they believed this was an infection. Sepsis and meningitis was mentioned again.

Ezra’s breathing began to slow and he was struggling so he was put on a life support machine and given pain relief to make him comfortable and so his tiny body could rest and try and recover. They took him for a CT scan which didn't show any significant damage which we took as a positive sign – however this now pointed more towards infection… They took him to NICU in his own private room to be cared for whilst we waited for a specialist team to transport us to Bristol Children's Hospital. We waited outside Ezra's room (where we were not aloud in) and around 7pm that evening a consultant came to speak with us and said the words, “you have a very sick baby.” I asked the question is he going to live and they explained Ezra would not make a full recovery…his illness will either leave him with a disability, paralysed to some degree or he will die. 

We arrived on PICU ward at Bristol’s Children’s hospital later that evening. He had changed again. We could see he had swelling on the brain. We sat with him, talked to him, held his perfect little cold hand. I think it was around then that we had the first lot of test results back which confirmed infection (sepsis). 

6:30am the following morning, there was a new team of doctors and nurses and as we approached them to see Ezra that morning I remember the look of pity in their eyes and they didn’t need to say anything, we knew this was bad. They went on to explain that the consultant would come and talk to us later that day but Ezra has shown no signs of getting better through the night. His infection markers were slowly on the decline but it was too late. The infection that got into his blood stream caused sepsis which then got through the barrier around his brain causing it to swell – this is meningitis (I’ve later learnt that newborns don’t have this protective barrier until 3 months old!). His pupils were not responding to light, the swelling on his brain was still there and they had started to switch off some of the drugs to see if there was any movement or brain activity from Ezra. I wouldn’t take my eyes off those tiny little fingers, hoping one of them would move. An hour or so later we followed the consultant to the family room where he told us ‘Your son isn’t going to survive this’. They planned to do another head scan that morning to confirm what they already knew. After this it will be our decision as to when we say goodbye and turn off the life support.

We had to leave to see to Coen at home but to also bring clothes and other bits in for Ezra. We returned to PICU around 3:30pm Thursday 10th January. Not long after we were yet again in that family room with the same consultant and the team of nurses and doctors who had been caring for Ezra. “The results of the CT scan, shows devastating damage. When we turn off the machines Ezras body will not be strong enough to live, his brain will not work.” The consultant explained he’d like to take some more blood from Ezra and urine and also do a lumbar puncture test. A lumbar puncture is a large needle inserted into the spine to test for meningitis and to know what form of meningitis it is. From what I understand they couldn’t do this at the start because of Ezra being so small it could of made him worse and they were treating him for meningitis anyway.

Around 5pm we gave the doctors permission to turn the machines off. Ezras battle had come to an end. At 5:37pm that evening Ezra’s heart stopped beating. We left Bristols Children’s Hospital at around 6:15pm that evening with a bunch of paperwork, a box with hand & foot prints and a lock of Ezra’s red hair. 

The following day I had a phone call from one of the doctors who told me the results of Ezra’s tests. The lumbar and blood tests combined revealed Ezra had contracted Bacteria meningitis, E.Coli to be precise. Although very very rare, it is more common in newborn babies. I asked numerous times how when and why but no one can answer this. The consultants can’t tell us how he caught this as 70% of new born babies contract ecoli in the first week of life as you can’t protect them from all bacteria (people’s hands, air born germs, bottle teets etc). Normally ecoli that lives in the gut is fine but what happened to Ezra is that somehow the ecoli in his gut got into his blood stream and no one knows how or why. There could have been an immaturity of his gut or a water infection or something else. 

I’m still trying to find answers now but sadly I don’t think I’ll ever know. Ezra’s low birth weight did make him more venerable as his immune system was weaker. Bottom line, trust your gut if you ever think anything is wrong - extra sleepy, won’t settle well, off feeds, unusually sick. Most importantly act fast.

E Z R A  J A X  J O H N S O N ~ you are and always will be a massive part of our family, miss you more than words can say.