I first met Nicola on our Facebook support group Mum Knows Best Warwickshire. Nicola had posted a comment about her little boy being very unwell and naturally she was very concerned about him. We all followed her post with anxious nerves and subsequently discovered that she was living every Mum’s worst nightmare and that her little boy had suspected Meningitis and that Nicola had followed her Mother’s Instinct when she knew something wasn’t right with her little boy. Here is her story…
So our little Oliver finally decided to arrive on the 3rd April 2013. After having so many problems during the pregnancy, going into labour at 25 weeks which thankfully the doctors managed to stop, intrauterine growth problems among a number of things, what a relief to finally have our healthy baby boy in our arms. At least we thought he was healthy.
The first 10 weeks went by in a blur. The worst experience of our lives. We already had a 2 year old daughter, who although is ridiculously energetic, had always been a content baby who slept brilliantly. Boy, we had no idea what sleep deprivation was until Oliver.
I was unable to put him down for longer than 30 minutes and the screaming was unbearable, somewhat like a strangulated cat, constantly wanting feeding, I stopped breast-feeding and put him on formula. This made no difference whatsoever. After much googling and getting absolutely nowhere with doctors, I found out about something called silent reflux. A total nightmare if you have ever experienced it. After initially being put on medication he seemed to be better, for about 2 days and reverted straight back to how he had been. After several conversations with doctors and being told to speak to my health visitor I asked if they were insinuating that I had PND. I didn’t, but I knew there was something wrong with my baby, no one was listening to me and quite frankly after 10 weeks of literally 2 hours sleep a night, yes I was getting emotional and very angry. He constantly arched his back during feeding but at the same time seemed to want to be fed. I was at a total loss of what to do.
After thinking about things, I swapped to a different doctors surgery, and thank God I did. That week, I noticed that Oliver was off his food, he didn’t want to be handled, and he was extremely quiet and had relatively dry nappies. At first I thought he was just having an off day, but for once on the morning of the 21st June he had slept through. At first I was so relieved, I’d had a decent nights sleep. Then this feeling of panic came over me. He’d had 1oz of milk before bed, hardly anything the day before, nothing through the night and he wasn’t crying to be fed well over 14 hours of going to bed. When I went into his room, he was just lying there, awake but not doing anything. I took his temperature and it was 40 degrees!
I thought he was a bit poorly but what came next, I did not expect.
I called the Dr in the morning and they were going to give me a telephone appointment. I missed this call around 12 and then had to wait until they reopened after lunch. Something at my previous doctors wouldn’t have happened as the shut at lunchtime on a Friday. They called me back and I explained what had been going on and they asked me to go straight down to the surgery. Once there, I was taken straight through and the Dr told me to go straight down to the hospital and that they’d be waiting for me. What she hadn’t told me was that she spotted some tiny pinprick spots on him.
At the hospital, Oliver was admitted straight onto the children’s ward. Blood tests were done straightaway and also a urine sample. We were told that if it all came back clear then the next step was a lumbar puncture and that they were going to prep him, just in case. Within an hour and a half they said all was clear so they were taking him for a lumbar puncture. I have never experienced a feeling like that before. Being so totally helpless and knowing there is likely to be something seriously wrong.
A little while later, the doctor and nurse came back in and closed the door. The look on their faces said it all. And our worst fears were realized. Oliver had bacteria in his spinal fluid, meaning he had meningitis and it was bacterial. The most aggressive form. Straightaway I envisaged losing him or him losing limbs. Every parent’s worst nightmare, and one which I thought only happened to other people.
We were told that they’d got it early and that it was good that nothing had showed in the blood tests. Hopefully it wouldn’t turn into septicemia.
IV antibiotics were given. Over the next 24 hours he had Calpol and Ibuprofen and his temperature wasn’t coming down. He had a fit in my arms as he was so hot. Absolutely terrifying.
Over the next week, my baby turned into the most relaxed baby I’d ever seen. He was finally happy. It was as if he had had something around him since birth and that finally he was feeling better. I asked the doctors if it was possible if he’d had some kind of infection since birth, which had manifested into meningitis and they had said it was likely.
The next ordeal we faced was that Oliver’s veins are ridiculously small and fragile. The cannula’s administering the antibiotics were blocking up within 24 hours. After a week he had run out of veins that were usable. So what next?
My poor little boy had been through so much prodding and poking with needles, it was heartbreaking. It was decided to put in a longline. A tiny tube that is fed through a vein in the arm and into the chest. It is a long-term way to give antibiotics, thus no more need for any more cannulas. They said it should take 20minutes to fit, that it wasn’t pleasant but it was taking them that long to put a cannula in so this was the best option.
After 20 minutes I could still hear him screaming in pain. I went into the room to see how much longer it would take. There was 15cm of this line to go in. They had managed 5cm. I gave them 5 more minutes and then asked for a consultant. He came in and said there was no way that was going to work due to his veins being so damaged. He needed a central line, which goes straight in to the neck. We were transferred to Leicester Hospital the next day.
He was given a general anesthetic and was taken down an hour later to see my little man. They said it had gone well and that he wouldn’t have any more problems with getting his antibiotics in. But when I looked at him, there was a noticeable difference in his eyes. One was much more open that the other. I pointed this out and was told that it was just swollen from where they had taped his eyes closed. I was not convinced. Three days later and there was no improvement. Oliver was taken to the eye unit, where they confirmed that something had gone wrong. His Sympathetic Nerve had been severed during the operation causing him to develop Horner’s Syndrome. His eyesight could be affected, he had a droopy eyelid, and his pupil was noticeably smaller than the other. They said that it could repair itself and that it could improve within 6 months.
I felt guilty that he’d had to have this central line, I felt guilty for not pushing the doctors at the beginning when I said there was something wrong with him. I was angry that no one listened and I was terrified that he was going to have long-term problems. But I was so grateful that he was still here and that he didn’t seem to have any lasting damage from Meningitis.
On the 8th July, my 30th Birthday, I got the best present ever. Oliver was discharged from hospital with the all clear. And I had the happiest little baby boy that anyone could wish for. Oliver is under supervision over the next few years and whilst his eyesight is developing. But although it hasn’t improved in medical terms, as he has grown, the asymmetry of his eyes is hardly noticeable and he seems to be able to see well through both eyes.
Almost one year on and he is just perfect.
I was not aware of all the symptoms of meningitis and now I’m probably a little over cautious.
My advice to any parents out there, is that if you think there is something wrong with your baby, then there probably is. You know your baby the best and don’t let anyone tell you differently!
My husband and I are running the Two Castles Run this June to raise money for Meningitis Now and to raise awareness of this awful infection. You can support Nicola and Meningitis Now by sponsoring Nicola on her JustGiving Page Here
We would like to thank Nicola for taking the time to write down her story to raise awareness of Meningitis and it’s possible symptoms.
We would like to send her family and Oliver all our love and are so, so pleased that the outcome was positive. xxx
Take It From Mummy.com & Mum Knows Best Warwickshire are also holding a sponsored ‘Toddle Waddle’ on Friday 30th May to raise funds for Meningitis Now, you can see details about the event here.
For support and more information you can visit The Meningitis Now Website and watch the video below www.meningitisnow.org and read the signs and symptoms so that you know what to watch out for