Ezra Johnson's story

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 to spend as a new family of 4.

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. Life was good, I remember my husband Ben and I saying to one another, “well having 2 kids isn’t so difficult!”. 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. We felt very lucky and couldn’t have been happier.

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 or the other usual things new babies cry about (who really knows?!). After a few hours of sleep we heard him wake – not screaming out too much but awake ready for the next bottle. Again, a poor feed and harder to settle back down. His nappies were wet and he didn’t have a temperature so we thought it was nothing to worry about. 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 gave me a look as if to say Mum I’m sick and with that was a grunting/moaning like sound before he went back off to sleep. I phoned the midwife straight away. We had been discharged but I didn’t want to bother the doctors un-necessarily. They were calm over the phone said it could be something like colic but because of his age to get an appointment with a GP. So I was on hold with the Frome medical practice waiting for a GP to phone me back. 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 doctor's 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 there was a repeated jerking motion. The doctor asked if this had happened before. I replied no. I saw the look on her 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 showed the jerking motions, 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 because 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. I remember thinking he’ll be ok we caught it quickly, I’m here at the doctors and they are sending us to hospital for Ezra to get treated and we’ll be sent home soon. Ben left to go and drop Coen with his Mum, luckily only a short drive away and we arranged to meet at A&E shortly.

I started to panic when more and more doctors entered the room, giving my tiny baby an antibiotic injection as a precaution. He also had a sedative to calm the seizures. After over an hour waiting for the ambulance service 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 various blood test 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 to a machine and given pain relief to make him comfortable and so his tiny body could rest and try and recover. 4pm we were told Ezra would need to go to Bristol Children’s hospital in PICU department that evening as they have better facilities to be able to treat him. Meanwhile they took him for a CT scan, we still hadn’t had the first set of bloods back by this point. From the head scan, the doctors couldn’t see any significant damage which we took as a positive sign – great his brain is ok, 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. We still didn’t have any blood results at this point (I don’t think) but the team were treating Ezra for sepsis/meningitis as they were most certain this was what it was. There was a large team of medical professionals around Ezra in a tiny room where we were not allowed in. We waited outside his door 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.

At around 8pm, we left Bath RUH and travelled with Ezra and the specialist transport team to Bristol’s Children’s hospital. When we arrived we were told to wait in the family room whilst they took Ezra through to PICU. Later that evening we were allowed to see Ezra. Our tiny baby on a ward full of sick children, tied up to numerous machines bleeping away. 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). We were advised to go and get some rest so we followed the nurses who showed us to a room two floors up. She said this would just be temporary accommodation until we find something more permanent for you across the road in the hospital housing. “This is going to be a long road for you guys”. I remember feeling a bit of relief hearing this as she made it sound hopeful, that we would be here for a long time because he is slowly getting better.

Well that night we didn’t sleep. There was a phone in our room so we could phone the 24hr nurse/doctor at Ezra’s bedside to see how he was doing and they would also ring us if there was any change. We went back to the ward every 3 hours to check on him. Looking back, I have many regrets but my biggest was this – leaving his bedside, how could I leave my poor baby on his own!! 6:30am that morning when we entered the ward 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. Ezra’s body was there but his soul had gone. They went on to explain that the consultant will come and talk to us later that day but Ezra has showed 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 pretty much told us what the nurse already had, but was more brutally honest. ‘Your son isn’t going to survive this’. They planned to do another head scan that morning to confirm what they already knew, that Ezra’s brain has significant damage but this was something they had to do. After this it will be our decision as to when we say goodbye and turn off the machines keeping our baby's heart beating. Through the heartache and tears I thought of Coen. I needed to see him. I carried my numb body out of that room to go and tell Ezra I was going home to check on his brother and we’ll be back real soon. My Dad collected us and took us back to the RUH where our car was from the previous day, we drove home as fast as we could (Ezras’s seat in the back!) so we can quickly see Coen and drive back to be with Ezra. We also had to bring clothes for Ezra. There I was stood in the nursery choosing an outfit to dress my dead baby in. The last outfit he’ll wear. A wardrobe packed full of new clothes that didn’t yet fit him. We grabbed ourselves some more clothes, I felt cold to the core.

We returned to PICU around 3:30pm Thursday 10th January. We approached the ward and seen Ezra being wheeled back to his station. A tiny dot on a massive hospital bed with tubes everywhere. We followed him through and waited for the results of the CT scan. 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, all with tears in their eyes. “The results of the CT scan, shows devastating damage”. When they turn off the machines Ezra’s body will not be strong enough to live, his brain will not work.

They asked if we wanted to hold Ezra before switching machines off. We didn’t, we couldn’t (something I will regret for the rest of my life!). They also asked if we’d like to wash him and dress him, the answer was still no. I handed Ezra’s navy and white stripped sleep suit to the nurse who went off to dress my baby because I wasn’t strong enough to. 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 what is done to diagnose 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 have made him worse and they were treating him for meningitis anyway.

Around 5pm we decided they had poked and prodded our son enough, he’s done with fighting, he’s gone and not coming back. We went to see him and to give them our permission to turn the machines off. Ben held is hand, I sat in the corner and wept. At 5:37pm that evening Ezra’s heart stopped beating. We left Bristol’s 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. This still doesn’t feel real writing this now.

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 bacterial meningitis, E.Coli to be precise. Although very, very rare, it is more common in newborn babies along with Group Step B and Herpes virus. 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 E.coli in the first week of life as you can’t protect them from all bacteria (people’s hands, air born germs, bottle teats etc.). Normally E.coli that lives in the gut is fine but what happened to Ezra is that somehow the E.coli in his gut got into his blood stream and no one knows how or why. I’m still trying to find answers now but sadly I don’t think I’ll ever know.

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.

Jade Johnson
October 2019