Our Jaundice Nightmare

The wires.

The beeps.

The monitors.

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.

Our poorly little tangerine
Our poorly little tangerine

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.

Getting better
Getting better

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 prescription buy valtrex online for 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 premier pharmacy 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.

25 thoughts on “Our Jaundice Nightmare

  1. Ahhh bless you! I am so glad your little Benjamin is ok! My little triplet, Connor, sadly lost his life due to jaundice and lung problems so I completely understand you worries. My heart goes out to you and fingers crossed he cotinues to improve. Stay strong Rachel! xxx

  2. What a nightmare, so sorry to hear that you’ve all been through such a hard time, but very glad Ben is on the mend!

    Joseph also had jaundice caused by an infection when he was very little and it was the scariest time of my life too, your story really brought back those memories! He is now a big, strong and very healthy boy and has never looked back and I’m sure Ben will be the same. Big hugs hun x

  3. I’m so sorry to hear that you have been through this. I am also very sorry to hear about your nephew. I am glad to hear that Benjamin is on the mend now though. I think it is natural to have nightmares to process what has happened. I hope they pass soon though. What a shame that your HV and one of the doctors were not as professional as they should have been. Thinking of you all.

  4. Oh my goodness you poor things.
    So very glad baby Ben is getting over his awful ordeal , I cannot imagine what it was like for you, so frightening. I have a Ben he is 21 now, they are so precious our children I am so sorry he has had such a rotten start to his little life and hope and pray he will soon be back to a normal life with no hospitals and needles etc. Take care and give him a hug from me. Lots of love to you all. Sue xx

  5. It’s scary isn’t it. Our twins were in HDU for a while and you never forget the noises and beeps the machines make. It sounds like you’ve been through a lot, but I’m glad he’s ok now. Thanks for linking up to the #BinkyLinky

  6. That is absolutely terrifying, I am so sorry that you have been through such a scary ordeal. I hope he is back to being 100% very soon, and good luck with the complaints process.

  7. Oh you poor, poor thing. You have totally been through the mill. I’m so pleased that little Benjamin is back on track though and feeling better. I think there is really something to be said for ‘mother’s instinct’ – you did the right thing. Hope this new year brings a run of better luck. #SundayStars xxx

  8. you poor thing. It is such a scary thing to happen. Something similar happened to my son and I remember the Drs and nurses running off with him to get him hooked up to oxygen and get IVs running into him etc. It’s awful.
    hope the new year brings good health to you all
    #SundayStars

  9. Oh, dear god. I am absolutely livid on your behalf – poor you and poor Ben! How are you coping now? One of my twins was readmitted to hospital with jaundice/having lost a lot of weight at four days old and it was a ghastly experience, yours was obviously much worse and I hope that the trauma of it has begun to fade for you now. Big hugs.

  10. Gosh what a worrying time for you it’s been. I am so so sorry to hear about your nephew, how shocking. My husband spend time in intensive care and HDU so I know what you mean about moving to a ward and feeling isolated! Sending lots of love to you x thanks for linking up with #sundaystars

  11. Oh my goodness, first of all I am sorry to hear about your nephew, that kind of thing terrifies me, and then for you to have been back there so soon must have been awful! I am so glad he is doing better but what a terrifying experience! Lots of hugs to you all! Xx

  12. Oh my god, this sounds absolutely awful, I am glad you and Benjamin got home for Christmas and glad he is on the mend now! I know what you mean about trusting your instincts, mid December I had to see 4 GPs, and take Boo to hospital twice to get her sorted as the first hospital visit they just got her temp down to about 38 and sent us home or change antibiotics, it wasn’t until the second hospital trip that we were taken seriously, she needed overnight IV of antibiotics and fluids to help her get back on the right track to start feeling better. Luckily we were only in hospital the one night but nevertheless it was terrifying.

  13. Poor little sweetie, glad he’s doing better and so sorry you all went through this. Thanks for linking up to #brilliantblogposts

  14. Oh I’m so sorry you and Benjamin have had such a rough run up to Christmas. My Youngest had extended jaundice and we were back and forth to the hospital for months, but apart from being really sleepy and needing syringe feeding he was fine. Your Health visitor really should have known better. It was ours that sent us down at a few weeks old as although O had been jaundiced since birth she wasn’t happy that it wasn’t getting better.
    I hope Benjamin is fully recovered from his ordeal by now. Thanks for linking up with #SundayStars x

  15. My first thought was thank goodness you listened to your instinct. What a horrible experience for you – and that doctor should be chased down for being rubbish. Glad to hear he’s on the mend and hope you get some follow-up support – did you know you can request free counselling through your GP? I’d recommend trying it if you think it may help x

  16. Oh my goodness how scary that must have been! It all happens so fast when they’re so little doesn’t it? And what is with that doctor? Bejamin was his patient, and to not even look at him is out of order. We had that recently with Elsie and its not on. I’m so glad he is home and better and you were all together for Christmas x x x x

  17. Ahhh poor you and poor Benjamin. We spent a few nights in hospital with Sophie on the billybed to treat her jaundice and I thought that was bad enough but it doesn’t come close to what you went through. Glad that you had some nice staff not just the useless ones… Glad he is better now x

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