Life after the death of Meningicoccal Septicemia :-(

[RhondaR]

I lost my beautiful 91/2mth old son to Meningicoccal Septicemia 181/2yrs ago. He was a big, blue eyed boy and always smiling and contented. The day before his death my Health Visitor did his hearing test and general check up, she said he was grand. However to me he wasn't himself so I got some paracetamol liquid at the chemist to give him at home. He went down to sleep as usual but his Daddy and I woke at 4.30am by the sound of his crying and vomiting.. I lifted our son, took him downstairs, checked him over and rang for the Out of Hours Doctor. One came at 5.30am said it was a virus, I was doing everything right and to ring my own GP in the morning. Between 5.30am and 3.50pm I had five diff doctors out to see my son as I knew there was something wrong with him but could not figure out what. I was told he was teething, had a virus, a cold, was just being tetchy. The Dr at 11.30am told my Mum to get me checked out as I wanted my child sick! This was because I asked him about the blotchy skin around my sons groin area, told him I had BM aged 3yrs and VM aged 11yrs, my Dad had VM a few years back, my cousins baby daughter had died due to BM last year (10mths old) and that a baby down my street was just out of hospital after having BM.. The last Dr whisked my son and my Mum in her car to the Children's hospital leaving me standing holding the hand of my 5yr old daughter. By the time I arrived at the hospital my beautiful baby son was already whisked away and we were told he was gravely ill and they were doing all they could. His Daddy was working so family tried to reach him as the rest of both sides of family members gathered in the waiting area. My son made it to Intensive Care but not the life support machine.. He went into Cardiac Arrest due to his Adrenal Glands shutting down and stopping his organs from working. My beautiful son became an Angel less than an hour after being taken to hospital.. I never saw him alive again.. The Dr told us about his death at 5.10pm as they had been waiting for his Daddy to arrive.. I've since found out my son had contracted Fredrickson Waterhouse Syndrome which is very, very rare but is a complication that can come out of Meningicoccal Septicemia.. Our hearts broke that day and none of our lives have ever been the same... My sons older sister has contracted VM 4 times in the last 3yrs and hospitalised each time. To me Drs are no further advanced in diagnosing or treating Meningitis any faster than they were 181/2yrs ago.. It hurts so much to know that I was right and my son was very, very sick but not one Dr gave any notice to what I said or how ill my baby actually was.. We will never know if our beautiful son, brother, grandson, nephew, cousin would have survived MS as he wasn't given the chance...

[coconut22]

What a heartbreaking story. It is such a devastating disease. How awful that your instincts were ignored by the doctors. I lost my brother many years ago to Meningitis, and likewise we were told just to give him paracetamol and monitor him. By the time they realised it was much more serious it was too late. Not a day goes by when I dont miss him terribly. I know there is nothing that anyone can say to help. Take care xxx

[Jeffery]

I am so sorry for your loss. I hear the anguish and frustration about the much delayed diagnosis and I can only imagine the desperation you went through. I agree that it seems to be such a crap shoot as far as getting a timely diagnosis with this disease and I pray that some day Doctors will actually listen to their patients and put their egos aside. God Bless You and your family. Jeffery

[RhondaR in reply to Jeffery]

Hi Coconut22 & Jeffery.. Thankyou both for your lovely comments. It means a lot to know that you took the time not only to read my sons story but to leave a message for me.. You're both so right in all that you've said and I couldn't agree more. I left a lot of detail out in my story as some things were better left unsaid .. Not a day goes past that I don't wish I could hold my son one more time.. xxx

[mudsweat2]

Hello RhondaR

I have just read your story and its sadly similar to my granddaughter who we lost on Christmas Eve.Just 8 weeks ago. This terrible horrible and utterly devastating disease took Freya from us so quickly. We are all shattered and wish we could have done something to start treatment sooner as time is crucial. My daughter had to wait at A&E for 2 hours before she was seen only to be told to take Capol and Freya was probably reacting to her booster injections.To cut a long story short Freya passed away 12 noon Christmas Eve just a few hours after being admitted to hospital. She was only 13 Months old. And we miss her so very badly.

[RhondaR in reply to mudsweat2]

Hello Mudsweat2,

Im so sorry to hear about the loss of your Grand-daughter Freya.. Her story is very similar to my sons and Im gutted to hear that 181/2yrs on from my sons death that Doctors still aren't taking this devastating disease serious!! Your daughter did everything she possibly could to save Freya yet they ignored her like they did me.. Another precious child has been taken from their loving family but still this disease isn't being taken serious by so called Doctors.. How many more children have to become Angels before Doctors decide to treat first and think later.. I understand the raw pain your daughter and entire family are feeling right now after losing Freya and sadly it never leaves, you just learn to live with it a bit more every day.. Please tell your daughter that she should never feel guilty about Freya because from what you've told me she did everything right and in her power for Freya to be seen by Doctors and her fears to be heard.. As for "Calpol" well I've heard that same line many times. I was given a prescription for a litre bottle of it for my son by one of the 5 doctors I had out to see my son, its a farce!!! There's no words to express how sorry I am about Freya and the gaping hole in all your lives now that she's an Angel but Im here if any of you would like to talk, scream, cry, ask "why Freya" or for anything as only someone who has lost their much loved child to this heart breaking disease truly understands how it feels.. Would you please pass on my thoughts and prayers to your daughter from one heart broken Mummy to another heart broken Mummy.. xx

[mudsweat2 in reply to RhondaR]

Thanks for your kind words, I will pass on your comments to my daughter and her partner. Luckily most of the family live close by so we are able to support them. But sometimes speaking to another person who has lost a baby to this awful disease might be helpful. I know that we'll never get over the loss, but my daughter is only 25 and Freya was her first child. So there is no other brother or sister that she can concentrate herself on. It is fair to say that the whole community around my daughter have really rallied and been great.

Once again thank you for your words they have been a comfort.

Eve- Freya's Nanna x

[RhondaR in reply to mudsweat2]

Hi Eve - Freya's Nanna,

Its good to hear from you as you've been on my mind since I read your story about Freya.. Its good that you've a big family and community that has rallied around you all. We had the same and it really does help.. I was 22 when my son died and it devastated me, still does.. I lost another son almost 11yrs ago so I now have two Angels.. None of you will ever get over losing Freya and no matter how many children may come along it will never be Freya and she will never be replaced or forgotten.. Its good to talk, keeping her memory alive does help as I still constantly talk about my sons and my other children refer to their brothers in different ways.. I know some people find it hard to talk and others don't like to mention Freya in case it upsets you but what people don't understand is that by not talking about Freya it makes you all think she's been forgotten about.. Personally the comment I detest hearing the most is "I understand how you feel, if it was my child Id kill myself", that has to be the most hurtful comment anyone can make as it makes you feel like you shouldn't be living and must be a bad Mummy,Daddy, Nanna, Granda.. Only those who have lost a child truly do understand how you all feel and its very early days for you all. Eve I've never celebrated Xmas since I lost my son, it felt wrong. So we go abroad every year as it helps ease the pain a bit and takes a lot of the emotion out of it.. From your story I can tell that Xmas will never be Xmas after losing Freya.. If there was a way for me to send you my number so that your daughter or you could contact me if you ever felt the need I would as that dark hole of despair with no light at the end is never ending for you all right now.. Love & Hugs to your daughter, family and you Eve.. Also to Freya, may she be playing with all the other little Angels and watching over you all xx Rhonda xx

[mudsweat2 in reply to RhondaR]

Thank you Rhonda, I'm so sorry about both your boys, you have had such sorrow in your life. How do you cope? Maybe its just a case of breathing in and out. Minute by minute. Hour by hour.Day by day. That's how we are taking things at the moment.

Eve x

[daffodil]

So very sorry to hear your awful tragedy.My friend has just published a book about her experience of child bereavement.It is a most touching wonderful book.She lost her 3 yrs old daughter due to drowning and has found writing a way to help her through and I beleive to help others who have lost children ( or lost anyone),whatever the cause.

It is good that you have found this website wheere there are many wonderful folks who you can share with.

I actually was planning to write a blog about it,so will try to do this soon.

In meantime the book is called A Mothers Grief - 30yrs on by Betty Madill.It is self published by Blue Butterfly Publishers bluebutterflypublishers.co.uk and I also think it is available on kindle(but need to check this) Her ist book is One step at a time/morning a child.

Not trying to sell,but thought it may help?