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Pneumococcal Meningitis

137 replies

Amyjade · 11/10/2005 10:15

Hi my name is Amy and i wanted to share with all you mums the tragic story of the loss of my beautiful, 19 month old daughter Freya.

I feel i need to get across to as many people as possible information on this 'HIDDEN' Meningitis which took away my baby girl.
Pneumococcal meningitis is never really talked about and parents of often ignorant to this terrible form of meningitis.
Pneumococcal is a severe form of bacterial meningitis which is more common in the under 2's.
Children don't usually get the so called 'RASH' with this strain which is why it is so hard to diagnose.

Freya became ill with a high temperature and vomiting on 5th April 2005 and was seen by my GP who said she needed parecetemol but Freya became very drowsy so we took her to hospital where she began to have seizures. We were transferred to our local PICU where Freya suffered kidney failure and irreversible brain damage, she died in her daddy?s arms 11 days later.

As all this was happening i was 28 weeks pregnant with my second daughter Libby who was born only 8 weeks after her big sister died.
Our lives have been torn apart after the loss of our precious little girl but the real kick in the teeth was that Freya's life could have been saved as there is a vaccine called Prevenar that protects children from the pneumococcal disease.

Prevenar has been used in the USA for over 5 years but still our government has yet to introduce it.

I hope this will make all parents more aware that this disease exists and that there is a vaccine to protect your children.
50 children a year die from this infection, in my eyes 50 is too many. something needs to be done before more lives are shattered.

Libby is 4 months old now and is about to have her third prevenar tomorrow.

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expatinscotland · 11/10/2005 14:50

Quite right, Moggy! I ride the bus w/a fella who became totally blind as well as deaf in one ear from meningitis as a complication of measles.

Here is a schedule of vaccines currently recommended for children in the US:

center for disease control

Heartmum2Jamie · 11/10/2005 14:57

AmyJade, I am sooo sorry for your loss, I can't imagine how difficult a time it must be for your family. I also knew about the vaccine, as my 15 month old is in the "at risk" group with congenital heart defects. As a matter of fact, I have the script written up for the jab, but have yet to get it done, and had almost decided not to do it. So thanks so much for posting this and giving me the smack upside the head I obviously needed (after nearly losing my son once, I shouldn't put him at risk.)
Hugs to you xxx

MoggyMummy · 11/10/2005 15:04

Yes Expat - when I came back I was shocked to find what was "not" on offer here and how difficult it is to go against the norm in terms of immunisation schedules.

I had never had kids in the UK so wasn't previously interested in this area of the health system, but I do feel we are SO behind in pediatric care in this country.

Sorry Rant over.

M2T · 11/10/2005 15:24

Unnecessary Mancmum!!

Mummyvicky · 11/10/2005 15:24

Amy
Thanks for your post about this. I am very sorry for the loss of your little girl. The website you have made is lovely
I have alot of mistrust in the UKs health policies lately and this is just another one!
Its especially scary that the hosptial didn't even know it was meningitis at the time.
I was hospitalised with meningitis and it is a terrible thing that happens very very quickly.
Wishing you all the best to you and your family
Vicky xx

expatinscotland · 11/10/2005 15:32

I buy some immunisations privately here and even then I always go in w/a bundle of print outs b/c the private GP can't understand why I want my child to have this vaccine or that.

angelcake99 · 11/10/2005 15:44

Amy- thank you for sharing this with mumsnet, i will definately speak with my Gp about the vaccination. I looked at your web site and it is beautiful and very touching. i'm so sorry for your dreadful loss but so grateful that you have thought to share your terrible experience with us... x

Amyjade · 11/10/2005 16:24

Thanks for all so much your kind reply's.
There are a few helpfull websites with more information on this disease.
WWW.RAPPID.ORG
WWW.MENINGITIS.ORG.
Freya's full story is under case studies on the meningitis.org website.

A few of my friends have had a real battle with their GP'S about getting this vaccine for their children. One health visitor even said the risk of catching this disease is so small it's not worth spending £110 on the vaccine!
When we take are children for the meningitis C vaccine they don't tell us not to have this one done and Meningitis C is just as rare.
As usual It all comes down to money!!

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expatinscotland · 11/10/2005 16:26

Amy,
The thought of healthcare professionals being so insensitive towards someone who has lost her precious child to a preventable disease makes my blood boil!

You've truly helped people by sharing your story, and made many other mothers aware of this disease.

Freya must be proud to call you her mum!

crazydazy · 11/10/2005 16:48

Amyjade, so sorry for your loss. Cannot begin to understand what your poor family has had to go through.

My DD (age 5) caught meningcoccal septicaemia when she was 3 whilst we were on holiday in Spain, although it was horrifying that it happened whilst we were on holiday we cannot fault the way in which the Spanish doctors acted so swifly when she didn't actually have a rash. The rash appeared after she had been diagnosed with septicaemia. Thankfully she survived and is a lively 5 year old with no problems.

We do believe though that if she had contracted this terrible disease whilst we had been in Britain she would not have been saved as the illness progressed very quickly and she was in a coma only half an hour after the rash first appeared on her ankle, just a couple of little blood spots!!!

It is really important that if you suspect that your child has meningitis (but no rash) that you act quickly and do not even go to the doctor, just straight to A&E!!!

Springchicken · 11/10/2005 17:00

I am sobbing! Can't even begin to imagine how you have coped
So unbelievably sorry amyjade x

Amyjade · 11/10/2005 17:26

We have gone over everything that happened leading up to Freya's death trying to find someone to blame.
I took her to the GP because she was being sick and had a temperature but these are symptoms of lots of childhood illneses so i don't blame him but i do think the doctors on AandE and the consultant that saw Freya should have ruled out meningitis in the beginning.
Freya was taken to one of the top Peadiatric ICU's in the country, they deal with this disease alot and they have told us they think it wouldn't have made any difference if Freya was treated with antibiotics from the first sign of the illness as it was her immune system that caused all the damage.(it's all very complicated)

I do agree though don't asume your child hasn't got meningitis just because they don't have a rash.

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Jemma7 · 11/10/2005 17:34

The rash is the first thing i look for an niavely (sp), if thee is no rash, I stop panicking!
Thank you so much for bringing this to our attention.

HappyMumof2 · 11/10/2005 19:11

Message withdrawn

crazydazy · 11/10/2005 19:14

I think you are a very brave person though coming on here because its so hard for us even to talk about it in our house and the outcome of it all wasn't sad as it was for you. Ellie was very lucky and there is not one day that goes by that we don't appreciate that. I have visited your little girl's website and she is really beautiful and I am so sorry for your loss.

I am not sure what else to say to you except that I hope the pain eases for you. Am thinking of you

crazydazy · 11/10/2005 19:18

Ellie's signs were aching joints, fever, vomiting and then she started fitting which was caused by the fever. Up until then we thought she had sunstroke as she had the signs of sunstroke too and had been in the pool a lot that day. The rash was the very last symptom before she became really ill.

At least she was able to tell us how she felt, babies cannot do that!!! The rash, I too believe is unmistakable, its not a spotty kind of rash, more like very small bruises!!!

HappyMumof2 · 11/10/2005 19:21

Message withdrawn

izzybiz · 11/10/2005 21:00

hello to all, i am amys sister in law, and i would firstly like to thank all of you who send comforting words and thoughts to her, it means alot. secondly i would like to echo what amy has said about Prevenar being safe, my partner and i paid privately for our daughter to have this jab,we saw first hand the devastation it caused Freya, her mum and dad, and all of us, their family. please please stay aware of this deadly illness.

anniebear · 11/10/2005 21:48

Amyjade

I have just posted on your other thread

My DD Is a survivor of Pneumococcal meningitis......just

she was on life support at 8 months, didn't think she would survive and if she did, we were told, she would be severely brain damaged

she did survive but does have a lot of problems

Ellie had no real symptoms, she was ill in the night and her mouth and arm twitched and she seemd a bit lethargic. The NHS phone line told us to call an ambulance, but the hospital said it was a febrile convulsion and she would go home the next day.

It was many many weeks before she went home. She had seizures constantly for a day and night, went onto life support, had two lots of brain surgery inc one to fit a shunt then went on to get a rare and severe form of Epilepsy.

There were no major symptoms. she was just about to be discharged when I noticed her eyes rolling round and called over the Doctors

It is a horrible horrible disease, one I had never heard of

My heart goes out to you so so much

xxxxxx

Hulababy · 11/10/2005 21:54

I am so sorry Freya's pictures are beautiful.

QueenVictoria · 11/10/2005 21:55

What a beautiful little girl. I am so sorry for you.

waterfalls · 11/10/2005 21:57

so very very sorry, I am crying with you.

Amyjade · 11/10/2005 22:04

Freya's seizure was also put down to a febrile convulsion but she didn't really come round from it that's when they decided to do a lumber puncture.

Freya's kidney's also failed so she was on a dialysis machine the whole time.
She was given a CT scan on day 5 which showed massive brain swelling and we were told she would be blind, deaf , epileptic and have the severist form of cerebal palsey but Freya didn't improve she was just being kept alive by machines.

I'm so glad Ellie pulled through, she is a very brave and lucky little girl

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Callmemadam · 11/10/2005 22:29

Amyjade, I just wanted to say how I agree with you about Prevenar, and I am so sorry for your loss. One of my best friends has a ds who contracted it at 10 months: he wasn't diagnosed for a couple of days but then the hospital saved his life, but he had irreversible brain damage. He can't talk, walk, hear or see. It has devastated their lives. I know you will never forget Freya, but she is at peace. Let us hope that evryone who reads this thread with an under 2 asks for the vaccine, and that some lives are saved in the future.

Amyjade · 11/10/2005 22:39

I know Freya is at peace and i hope one day i can be gratefull that she never lived a life so badly brain damaged that she could't even swallow for herself but for my selfish reasons i need her here with me damaged or not as i miss her so so much.

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