Guest post: "Meningitis was not on my radar at that point as she didn’t have a rash"

[MumsnetGuestPosts]

My daughter Amelia was just nine months old when she was diagnosed with meningitis and our lives were turned upside down in a heartbeat.

Amelia had been out of sorts, with a high temperature and she was off her food and milk. As time went by she became more unwell, her temperature continued to soar and she began vomiting.

Eventually, all she wanted was to sleep. I noticed Amelia’s skin was mottled and her breathing became too quick, she didn’t want to be held or woken, and let out a sad little cry when we tried to comfort her. I felt the situation was becoming very serious, she was clearly showing signs of infection, but meningitis was not on my radar at this point at all as she didn’t have a rash.

I made an emergency appointment at the GP and they told us to go straight to hospital as she was getting worse with every moment that passed. At A&E, Amelia was assessed - one look at her and the consultant knew something was very wrong. We were given the news every parent fears to hear, suspected meningitis. I couldn't believe it, as she had had all her vaccinations. I didn’t know we don’t vaccinate for all strains of the disease.

Amelia was diagnosed with pneumococcal meningitis and sepsis. The guilt I felt at not being able to protect my little girl was overwhelming. Seeing her lying there in that huge hospital bed covered in wires and tubes... it just felt so cruel.

Amelia’s condition was rapidly deteriorating so the doctors decided to place her in a coma. Time became a blur after that moment as she fought for her life in intensive care. We watched as the hospital performed every invasive test and treatment imaginable.

During those dark hours and days we spent by her side we researched everything we could about meningitis; the signs and symptoms, the most at-risk groups, that rash, the long-term effects and its overall survival rates. Meningitis kills 1 in 10 and permanently disables a further third of survivors. It is a fast-acting and absolutely devastating disease and it can kill within hours.

Why hadn’t I educated myself more? I should have known not to wait for a rash! I found out not all strains of the disease present with a rash and when it does the disease is often in a more advanced and critical stage. At no point during her illness did she develop one.

Fortunately, as the days and weeks passed Amelia began to respond to treatment and they were able to take her off the life support. The specialists became more reassured she hadn’t developed any serious brain damage. We’re still unsure whether her illness has impaired her hearing and there is the possibility she may have learning difficulties when she’s older. However, we were just relieved to have her back with us at home. Amelia took her first steps just days after being discharged from hospital and I can’t explain what a cathartic moment that was for us all.

I’ve never been more in awe of our emergency services and all the staff of our NHS. Their fast actions and treatment gave our baby the best chances of survival and we are forever grateful.

In the days after we returned home, we contacted the Meningitis Research Foundation (MRF). The charity funds research, provides information to the public, provides direct support and ongoing personal help to people who have been affected by meningitis. MRF was a huge source of emotional support to us as a family and was able to offer us more information on meningitis and what to expect in terms of long term recovery.

Right now the charity is behind a global plan to defeat meningitis. You can visit their website to take the short survey on what you would change or prioritise to ensure meningitis is defeated. I share MRF’s goal of ending meningitis for good. I hope one day that no family has to go through what we and so many others have experienced.

[ColdCottage]

The best advice I was given on this was if your child (or an adult) becomes sick really fast seek medical advice and always ask why they are excluding Meningitis, if they can't say why it needs to stay on the table.

[HJWT]

@ColdCottage I take my DD to urgent care if her temp doesn't come down with paracetamol and then a later dose of Ibuprofen an hour later & shes 3! You can NEVER be to safe with a baby...

I am so glad little Amelia is home and safe!!

[BirdyBedtime]

So glad that Amelia is well now. My DS developed meningitis at 3 weeks but recovered well. I will be eternally in debt to take GP who sent us to A&E and the doctors there who saved his life. He went downhill over a few days but being sleep deprived we missed the signs until his skin became blotchy - even then I didn't connect it in my head with meningitis as it wasn't a 'rash'. I'd say to anyone that you can't be too careful with a baby - always go to GP, OOH or hospital if you are worried - they should never make you feel like you are wasting their time.

[Stickmangate]

I’ve had this strain of meningitis twice, both times as an adult and am currently recovering from the second dose! Neither time have I had a rash and didn’t have a high temp till I’m hardly conscious.

For me both episodes have started with a headache that moved to the back of the head , frets worse and painkillesrs don’t touch.
Lucky for me both me DH knew what to look for and went straight to A&e and while the Drs and all staff did a great job at saving my life. It still took my DH and hour & half to get the Dr to look at me, by which time I was hardly awake. Once the DR as me I was transferred to majors and treated. I think the key is if someone gets ill quickly get advice.

So glad your little one is ok x

[Footle]

I think the OP could be rephrased. Meningitis doesn't kill one in ten babies. It may kill one in ten of the babies who are unfortunate enough to get it.
I'm very glad Amelia is back home.

[MeningitisResearch]

Meningitis Research Foundation here! We're really proud of Kirsty for sharing this story to help raise vital awareness of meningitis. If anybody has questions, comments or concerns we're always here to help. You can call for free in the UK on 080 8800 3344, Ireland 1800 41 33 44 or email [email protected].

[oricella]

Thanks for sharing your story and glad that Amelia is OK; your story rings so many bells - DD was 7 weeks when she contracted pneumococcal meningitis - she was due her first vaccination at 8 weeks! NHS out of hours was brilliant in picking it up and urging us to get her seen - but even then meningitis never crossed my mind, not even when we got to A&E. I think the messaging around a rash and the glass test can do more harm than good at times.

DD had to be moved to a different hospital with a PICU and ended up sedated and intubated for 3 days.. the worst days of my life. She pulled through, but it took me a good few years to both accept that there was no lasting damage and to get over the guilt of not recognising the signs. Do be kind to yourself and try and ditch the guilt earlier than I did, because it doesn't do anyone any good; raising awareness like you do is fabulous

10 years on for us it's almost old history, but I still have a pic on my desk of her shortly after coming of the ventilator and giving her first smile ever! But every year, it happened on a major holiday, I still relive that night. One day, I hope that will pass too.

[WomanLikeMeLM]

Im an A&E Nurse and we always say to check hands and feet, warning sign if their cold bring straight to A&E.

[DorothyBastard]

Thank goodness your precious DD is back home. This post took me right back as my son contracted the same strain of meningitis and sepsis at 8 months despite being fully vaccinated too. Unfortunately, despite us going home and thinking he had emerged unscathed, it turned out the pneumococcus has migrated into his heart and over the following weeks it destroyed his aorta valve. He went into heart failure and had open heart surgery at 10 months old. I had a thread on MN at the time which kept me sane! We’re coming up to three years on now, and although he will need a further open heart surgery in the future, for now you would never know he’d been ill.

[toastytea]

Thank you for sharing this.

[Mumofboys1]

Gosh, reading this takes me straight back to my son having meningitis 3 years ago, at 5 months old. I always find this time of year very difficult as I relive it so much. Thank you for sharing your story, and I'm so glad to read she is home. There are some truly incredible staff in the NHS.

[jwpetal]

Your story is similar to ours. 5 visits to gps and hospital. All with early signs of pneumococcal and finally diagnosed with a rising strain after fontenella sunk and she was green. She suffered brain damage following seizures and coma.
She was 5 months old. She is 10 now and our miracle. She has hemiplegia and due to being a summer born we fought and won reception start at 5, which means she is older and more able to handle her school work.
My biggest lesson is do not give up when your little ones are ill and doctors do get it wrong so be persistent.

[sijjy]

I'm so happy Amelia is home and well. I'm also so glad you had amazing doctors.
Our story was a little different. Our 3 month old son suddenly became very unwell. He started randomly crying but a very high pitched cry that we hadn't heard before. After a few hours his temperature was nearly 40. We rang the doctors and was told they had no appointments. We took him to A&E. After waiting there for what seemed like a eternity we were told by a doctor he had gastroenteritis. I wasn't happy with this but the doctor was adamant and even half laughed at me. As we were walking out I was telling my husband I was taking my older children to my mums and taking our 3 month old to a different A&E the nurse that was working there must of saw that we wasn't happy and ran after us and said let me just take his temp again. It hadn't come down with any of the medication he was given. Also by this point he had a few pinprick like marks that weren't disappearing. Luckily the nurse got him seen by another doctor. He was admitted. 3 days later after a lumbar puncture he was found to have viral meningitis. I know this isn't as bad as other meningitis but he was still very unwell. And it could of quite easily of been any strain they didn't know until they had the test results.
I wish all doctors would listen to parents instead of dismissing them. I am thankful for the lovely nurse.

[EsmeeMerlin]

So happy your Amelia is safe and well now. My niece also an Amelia developed bacterial meningitis at 8 months old in 2015 and sadly did not survive it.

More information on the signs does need to be given to parents.

[theladylovescupcakes]

We had a similar situation with our son when he was 8 months old - pneumococcal meningitis and septicaemia - and no rash at all. He made a full recovery, despite being at death's door - we're so lucky. Hope your daughter is lucky too OP.