His cry when he wanted a feed that he couldn’t have.
His little yellow face.
His yellow, sunken eyes.
Two doctors bent over him, trying to take a million blood samples.
My little baby, just three weeks old, hooked up to a drip with cannulas in both hands, so that I can’t hold them.
Things I will never forget.
I never thought I would be spending the weekend before Christmas on a high dependency unit with Benjamin. But I did.
On the Friday before Christmas, he seemed ok. He’s always been a quiet baby, never making a fuss. The health visitor came out to weigh him – and noticed that he had lost weight. He was actually 5oz lighter than his birth weight. Because he hadn’t dropped any centiles, she wasn’t concerned, so nor was I. Whilst getting him dressed, I noticed he had quite a yellow tinge to his tummy and his eyes, and pointed it out to her. She said he was slightly jaundiced, but that it was totally normal and to put him in sunlight as much as possible. Again, because she wasn’t concerned, nor was I.
The next morning the yellow was even worse. I noticed through the night that the wee in his nappies was quite dark coloured, and he seemed even more lethargic than usual. Something in my head was telling me that it wasn’t quite right, so I phoned 111 who advised me to take him to a walk in centre. Leaving Graham with Harrison and Alex, we got on the bus and headed to the walk in centre at the hospital, expecting to be home a couple of hours later with a course of antibiotics for Benjamin.
After waiting for an hour, we were seen by a doctor who didn’t seem to be able to tell me much. He referred us to the paediatric unit at another hospital (where Ben was born). My mum came and picked us up and drove us over there. By this point, I was beginning to worry, but thought at worst they would put him in one of those light boxes for a while. When we arrived there we were taken straight to a side room, where a team of nurses and doctors quickly appeared. Whilst I was explaining what had been happening, they were taking blood, putting cannulas in both hands, pumping several antibiotics in one and putting him on a drip in the other because he was dehydrated. It all happened so quickly and was such a blur. The doctors were lovely but I could tell they thought something was seriously wrong. I later found out that meningitis was their first thoughts, especially as he was staring (I didn’t notice this but my mum did), and arching his back.
Eventually, we were moved to the High Dependency Unit (HDU). Even the name of this ward was enough to frighten me. Just a week before, our two year nephew became very ill very suddenly, and died there. For us to be in the same ward a week later was our worst nightmare. The staff were fantastic. My mum had left to take over with Harrison and Alex so Graham could come to the hospital, but whilst I was alone and in floods off tears, they gave me hugs and cups of tea. We had to try and get a urine sample – next to impossible with a three week old. Because he had been dehydrated, his sodium levels had dropped dangerously low so apart from a ‘comfort feed’ of half an ounce when he was at absolute screaming point, he wasn’t allowed a feed. The nurses made him a makeshift dummy (he’d never had one before) from a bottle teat and cotton wool to stop him sucking in air, but it broke my heart not being able to give him what he needed
By Sunday morning we had a slightly better picture of what was going on. He was no loner dehydrated and his sodium levels were rising so he as able to have feeds again. The tests showed he had some sort of infection, but they then needed to nail down what it was and what had caused it. The doctors suspected that it was a water infection because of the jaundice, but couldn’t be too sure. Meningitis, although now unlikely, couldn’t be ruled out until they did a lumbar puncture, but other horrible conditions such as cystic fibrosis were also mentioned. Sunday was a very long and very emotionally wearing day. In the afternoon whilst my mum and Graham were there he went for a lumbar puncture, which we were advised not to go with him to as it is horrible. Not being there and knowing he was in pain was horrible.
Sunday evening brought some positive news. The lumbar puncture showed it wasn’t meningitis. His jaundice levels were falling, and his sodium levels were rising. He was responding well to the antibiotics and his liver and kidneys were functioning normally. The Doctor, who had been with Benjamin from the start, was almost certain that it was ‘just’ a nasty water infection and nothing more sinister. I knew he wouldn’t give me false hope, and so for the first time in almost 48 hours I began to relax. Monday was another day of sitting around and waiting. I was told that he needed a kidney and liver scan to rule out any blockages and that if they could get that done that day, there was a chance we could go home that evening. Unfortunately, they didn’t get us in and said it would be done the next day.
On the evening, we were transferred from the HDU down to a side room. Sounds great but after having nurses in the same room 24/7 and making friends with the other mums in the unit, it was actually really lonely, especially as we were right at the bottom of the ward. I was allowed to give Benjamin a bath before bed, and then I settled down on the mattress on the floor for some sleep. Ben had other ideas. Suddenly it was play time!! By 5.30am I hadn’t had any sleep because Ben just wouldn’t settle. The nurse who came in at that point to do his observations gave him a small amount of calpol. He didn’t seem in any discomfort, but it knocked him out straight away and I managed a couple of hours sleep. A doctor we hadn’t seen before, accompanied by a junior doctor came to see us Tuesday morning. I had been told that the ultrasound would be that morning, so was all ready for it. The doctor then made me go through the whole experience from the start (literally had to tell him all about my pregnancy!) as if he hadn’t read my notes. He also asked me what treatment we had received at Good Hope hospital – a hospital I’ve never stepped foot in! He told me that the scan was booked for the next day. At this point I exploded – he seemed to know absolutely nothing, and was now telling me we would be stuck in hospital until Christmas Eve. He hadn’t introduced himself or even acknowledged Ben when he was looking at him. I know he was only three weeks old but all the other doctors and nurses had made an effort to say hello to him, which makes a difference. He is still a person! When he left, the junior doctor loitered a bit and apologised for the misunderstandings.
The lack of communication and the doctors attitude had really pissed me off, so I found a nurse who helped to try and chase things up and get the scan moved so we could go home as planned. The junior doctor came back in and said that although they couldn’t get the scan brought forward, we would be able to go home after Ben had his antibiotics that afternoon, as long as we came back in the next day for the scan. Result! We got home about 5pm, which gave me enough time to finally sort out and wrap all the Christmas presents. It was nice to sleep in a proper bed and have a decent shower after four days of mattresses, hard chairs and lukewarm showers!
The next day my brother took me back up for Ben’s scan and antibiotics. The scan was straightforward and showed that everything was normal and fine – a relief! However, the sonographer advised me that the doctor should have told me to withhold feeds for six hours before the scan. Another black mark against his name in my books! Once we had the scan we had to head up to the ward for him to have some heel prick tests and his antibiotics. Like me, Ben is rubbish at giving blood so the poor little thing was constantly being pricked and squeezed. He’s got that used to blood tests that he was just sleeping through them! By lunchtime, we were free to go. Because he was so poorly, his antibiotics still need to be administered through a drip once a day, so we have a lovely nurse from the PATCH team come out once a day to do it. Each time it takes around half an hour and goes through the cannula in his left hand. There will be a couple of days where they can’t come out so we will have to pop in for him to have it done. He also needs another blood test at some point.
The main thing is he’s getting better, and other than giving his immune system a knock, it shouldn’t have any lasting effects. We’ve found out that it was a water infection, caused by e-coli. We all carry the e-coli in our bodies, and occasionally, it can be transferred through birth. Because of Ben being born so quickly and me having a nasty tear, this is where it more than likely came from – especially as a week after giving birth I also had a minor water infection. I fought it off without treatment in a couple of days, but obviously a newborn has no immune system and so it attacked his little body, causing sepsis. The doctors had never seen anyone with jaundice as bad as Ben’s. Ideally, the bilirubin (the stuff that controls jaundice) levels in a babies body should be under 5. At one point, Ben’s were nearly 300, which shows just how poorly he was. If I had listened to that health visitor, and not taken him up to the hospital when I did, he wouldn’t be here now. When I feel a bit calmer about what has happened, I’ll be making a complaint against her – the nurses and doctors have actually told me to do this because she should have known that jaundice doesn’t suddenly appear on a three week old, especially combined with him losing weight.
I’m so glad Benjamin won’t have understood what was going on as it was terrifying. Part of me wants to forget what happened, especially when I wake up in the middle of the night in tears after another nightmare about losing him, but I also need to remember every last detail, to remind me how lucky we are to still have him, and how important it is to listen to your instincts when it comes to children.