Guest post: "My baby had meningitis - I was helpless"
Weep for Sleep
Posted on: Tue 01-Sep-15 16:24:04
(20 comments )
His little legs and arms were red hot, just like his chest and back. I didn’t need a thermometer to know my three-month-old son had a fever. He had woken from an unusually long sleep and was screaming himself into a frenzy. He was normally so cheerful in the mornings.
I had been drifting off into a breastfeeding daze when I felt the shock of him burning up. I caught his dad's eye - does he normally scream like that?
Today, on the day that the Meningitis B vaccination is added to the National Immunisation Schedule, I can't help but look back at what happened and shed more tears.
It was one year ago exactly. For two hours the screaming and feeding cycle was repeated. I hadn't seen a single smile. With a few nappies and wipes hurriedly thrown into my handbag, I announced that I was taking my baby to hospital. I drove straight to A&E.
The symptoms sounded ridiculous when I said them out loud. I hadn’t taken my son's temperature but I knew he was hot. He was very irritable I said, aware that many three-month-old babies could easily be described as grumpy. He’d had a lot of sleep, I added.
The initial temperature reading was normal and his other stats were fine. I was told he might have an ear infection, or possible a urine infection. Nothing major. But the second temperature reading was slightly raised. He was given Calpol.
The doctor, thankfully, knew something wasn't right. My baby screamed as blood was taken from the back of his hand. It dripped out at a snail's pace. In went the cannula. There were more screams, more agony - and all the time I was helpless. A teddy bear sticker secured the needle. It broke my heart.
The doctor, thankfully, knew something wasn't right. In went the cannula. There were more screams, more agony - and all the time I was helpless. A teddy bear sticker secured the needle. It broke my heart.
A nurse suggested I made myself a cup of tea while my baby was given a lumbar puncture. Even at the end of the corridor, through two closed doors, I could hear him scream.
When I returned he had passed out from the trauma. Stabbed and plastered. Needles and teddy bears. Red and shattered. He slept.
And then the doctor returned with the nurse to tell me the bloods tests were clear but the lumbar puncture showed elevated lymphocytes.
"I'm sorry, your son has meningitis." My tears rolled while my eldest daughter climbed into my lap to wipe them away. "Don't cry, mummy."
The doctor continued: "All signs suggest it's bacterial."
She explained that one in four babies suffered permanent hearing issues as a result of this diagnosis. Later, I consulted google and found out what the doctor hadn't said.
One in ten babies die from bacterial meningitis.
There was no time to lose, despite full cultures taking 72 hours to return. Antibiotics were started immediately and machines buzzed and whirred. There were tests and drugs and isolation signs on room.
"What's wrong with your child?" we were asked. "He has meningitis."
Someone told us her ten-week-old son had it. The doctors had waited for the cultures to come back before they started antibiotics. He died.
Nearly 72 hours after the cultures were taken, we ordered a pizza. And then the door opened, the lights flooded in, and we urged for quiet as our baby had just gone off to sleep.
The results were in, the doctor said. It was viral meningitis. Antibiotics were pointless. The lines were out, the discharge papers were issued, and just like that we were sent home to rest, recoup and recover.
My son experienced huge weight loss after his hospital stay and blast of antibiotics, dropping from the 99th percentile for weight to the 50th. There were screaming 'attacks' of pain over the next few weeks while I watched him arch his back and thrash around.
At his post-meningitis hearing assessment the technician was not happy with his response to tonal notes. He will need reassessing in six months' time and soon we will know whether there is any permanent hearing loss. We will have to tackle it head on.
There were, looking back, so few tears shed in hospital. There have been so many more cried today as I think back to what happened. To other parents - check the symptoms, know the signs, and schedule your child's immunisations. Remember too that not all forms of the disease are covered by the vaccine. So please, trust your instincts, and act fast.
By Lizzi Wallace
Reading this has brought back a lot of memories from an eerily similar situation. I'm glad to hear about the vaccination as, even though I've experienced Meningitis, I can't say I'd definitely spot it again, it's just takes hold so fast. I hope your boy's hearing is ok and you are too
I'm sorry you and your son went through this. I hope he fully recovers and has no future problems with hearing. I had my two children, (4 & 7) receive the first of 2 doses of the vaccine on Monday. I'm wishing away the next 2 months until they can have the second dose and I know they are protected against this awful disease. Thanks for your post
You've done the best thing by vaccinating and getting informed. Thanks for reading x
Thank you, hopefully we will know in a few weeks what the next stage holds. Thanks for reading x
Thanks for sharing your story and I hope your son makes a full recovery.
Can I request this vaccination for my 2 year old or is she too old for it?
Hi Snozz if your child is too old to receive the vaccine free via the NHS (and I think at 2 she may be) you can still have her vaccinated privately by a non- NHS GP. I discussed it with both my NHS GP and HV before having it done but to be honest neither was able to give me a whole lot of info., and certainly they weren't able to make any recommendations of where to go so I just searched for a local private GP and took it from there.
Thanks decanter, do you know what the risks are for a two year old who catches this (are they as high as for baby)? I wonder why the nhs are only vaccinating babies.
I don't know specific stats but the doctor (NHS) told me that the reason for the targeted groups is to do with an increased risk in babies (that and funding, which just wouldn't run to all children). I think although the chance of having meningitis is low, the survival odds are very low too and I don't want to take the chance.
Thanks decanter I will look into it. I am also pregnant with dc2 so if dd gets vaccinated that would also stop her passing it onto the baby before he has his immunisations done. How much did it cost, if you don't mind me asking?
I had no idea this was being added to the schedule. DD is 4months old and has finished her first lot of imms. Will contact HV to ask about getting this done.
Thanks for the post
My DS had bacterial meningitis at three weeks old (although it was a rarer bacteria than this one that caused it so not sure if the latest vaccine would have helped, and would have come too late anyway). He seems to be ok, has some follow up but the first hearing test came back clear. He has just had the new vaccine.
Our experience was very similar to yours, Lizzi, although ours necessitated a long stay in hospital to receive the antibiotics. I'm writing this as I feel sad about what happened. At the time, we didn't realise the seriousness of the situation (because it takes a while to diagnose) and I now feel guilty that I may have seemed dismissive about it at the time. I think it's because he didn't seem unwell, he just had that initial fever. I now keep thinking about what might have happened if we hadn't sought medical help, if we hadn't noticed the high temperature (it was a hot night), if we'd decided to wait and see if the temperature went down. I know that all of these things don't matter as it all worked out ok (as far as I know) but I can't help replaying what happened. He's sleeping peacefully at the moment and looks so beautiful. I feel so bad for what might have happened. I'm now crying. I'm an idiot.
I'm going to look into getting the vaccine for my other child. I hope that your son's hearing is ok and that he makes a full recovery.
Hi Snozz it was £600 all in for both children, so each dose is £150 and 2 doses are required.
This has brought back so many painful memories for me. Ds got meningitis at 3 weeks following from urine infection. At the time I didn't let myself think about the fact he might have died but looking back we were so so lucky. He is now 6 and a healthy boy although still some minor hearing/processing issues that we'll never know if they were caused by the antibiotics. Please take the vaccine for your children - it wouldn't have helped in DS case due to the bacteria he had but when it comes to teeny ones we should do what we can to protect them.
Thanks decanter, unfortunately I don't think we'll be able to afford that
DS2 had meningitis at 4 weeks (caught from DH who had enterovirus) - at first suspected bacterial, then confirmed as viral when they identified the virus a week later. He did pass his audiology screening and has no obvious developmental difficulties but had numerous infections and health issues for some months afterwards. It was the most awful time. I have had a DD since, she's now 15 wks and was one of the first to receive the vaccine under NHS guidelines 3 weeks ago. I didn't hesitate to take up the vaccine, even for a heartbeat - I never, never want to relive that time.
Hoping that everything resolves itself with your DS, and thank you for sharing your story.
It's expensive isn't it I did hear of someone getting it cheaper (around £70 a dose iirc) from their own GP but I don't know how this works. Wouldn't hurt to ask I guess.
My DS had viral meningitis at 7 weeks. Like you they thought it was bacterial at first. He was given 48 hours of IV antibiotics but now seems absolutely fine. In fact, at the Sick Kids' Hospital in Edinburgh they are mapping outbreaks of viral meningitis with a view to proving that it has no lasting effects. This doesn't seem to be the advice given to most of you - I wonder why? I was asked to take DS back at 6 months for a check-up and he passed with flying colours.
I am also positive that DD (then 2) had it as well - she had had exactly the same v high temp and misery 3 days before. I didn't think anything of it - I just gave her Calpol and lots of cuddles.
If I hadn't had DS's 6 week check booked at 9.15 the morning he got ill I might not have taken him to the doctor. I didn't know that very small babies just don't get temperatures. I knew he was hot but I tried to take his temp with an ear thermometer and it was too big for his little ears, so it said 37.9. The GP got a temp of 39.9. We were sent to children's A&E with a letter from the GP and DS was given a lumbar puncture. Apparently he fell asleep during it! Naturally it was a Friday and we were admitted but no results came back until the labs reopened on Monday. It was clear by Sunday morning that he was back to normal, but I wasn't entirely convinced he was going to be OK until the formal results came back.
Does anyone know where to get Meningitis B vaccine in London?
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