Meningitis has been in the news a lot recently thanks to the petition for the meningitis B vaccine to be made available to all children. I recently got chatting to a lovely lady called Rosina on The Dad Network Mums Facebook page. Her daughter contracted meningitis and septicaemia when she was just 12 weeks old. Here is their real life story of a baby with meningitis.
“On Tuesday 25th June 2013 I rang for an appointment with my local GP surgery as my baby, my 12 week old daughter, seemed unwell and I could feel her chest crackling on my hand when she was breathing. She also had a noisy chest and kept trying to clear her throat and was fussy feeding so I thought that she may have a sore throat too as she had been quite congested and needed regular nasal aspiration at home to clear her nasal passage. Her colour was not right either, she was pale. She would cry out at nappy changes and was even more distressed when clothing was changed which, looking back, was due to the sensitivity to touch because the brain was fighting infection and muscle pain associated with the infection. She would not sleep during the day with bright sunlight for more than 15/20 minutes, maybe once or twice a day.
On ringing the surgery I explained to the receptionist that I felt she had a chest infection as they documented as a reason for my attendance. I attended the surgery and took her to be examined. I put her on the couch the doctor used the tongue press to examine her mouth and stated she had oral thrush and prescribed Nystatin. She then listened to her chest but told me that her chest was clear. I trusted the doctor but my instinct told me she was wrong. On looking back I know my daughter was very distressed at the time so this could have meant she missed the chest evidence due to the noise. But she should have re-examined her.
My daughter’s condition slowly deteriorated over the next 48 hours and early hours of morning she was rapidly deteriorating, she vomited after feeding and developed a high temperature.
I had been giving her Calpol for a temperature for over a week but on this day it did not work in bringing it down.
At 9.30 am I stripped her clothing down, the temperature continued to soar but her hands and feet were icy cold and almost blue. I gave her Calpol to try and reduce the temperature again. By approximately 11 am she had fallen asleep in my arms and was very limp and heavy like a lead weight and her breathing was rapid. Again my instinct felt something was terribly wrong so I woke her up and she immediately started having seizures. She experienced 10 seizures in the space of approximately 15/20 minutes. Seizures in infants are not obvious and can be mistaken for startled crying fits if you don’t know what you’re looking for.
I screamed to my partner to ring for an ambulance after the first fit (I am medically trained but when it is your own, calm goes out the window). The ambulance crew arrived very shortly afterwards but it felt like forever and I was supported by the ambulance support crew on the telephone to manage the fits. She talked me through putting her on the floor and making the area safe around her and to keep note of the length of the seizures and frequency.
My daughter was examined in the ambulance and given oxygen. Her temperature was 40+ and she was vacant but with periods of distress. The seizures stopped shortly afterwards. We were driven to the accident and emergency department and the medical staff took over and a full history taken. An IV was inserted, pr paracetamol administered and oxygen therapy continued.
She developed sensitivity to light, noise and touch. She was transferred over to Paediatric HDU and re-assessed. The paediatric team after examining her thoroughly began treating her with IV Acyclovir for a possible viral infection and IV cefotaxime for bacterial infection. I only know this because I asked to be kept informed because nobody was telling me anything and my mind was racing.
Then they explained they felt she had meningitis and septicaemia. A lumbar puncture was performed and evidenced meningitis as WBC present and cloudy fluid and blood cultures revealed pneumonia. The consultant explained that the meningitis had developed secondary to the pneumonia which apparently was not there less than 48 hours before according to the GP who stated she was not presenting as unwell during her examination.
I urge anyone PLEASE do not wait for a rash to be present because my daughter never developed a rash at any point…. I know then, today and for the rest of my life I will always trust my innate instinct and intuition.
GP’s in general can be trusted with advice and diagnosis. Meningitis at times can be difficult to detect but missing the original infection I feel was down to the GP not having current up to date knowledge. As the area of general practice is vast it would be impossible for GP’s to update in every single condition and symptom regularly, but I personally feel due to the nature of meningitis and septicaemia and its consequences of long term effects and even death, it is extremely important that both the public and medical professionals receive adequate regular training. This is to allow early intervention and diagnosis and also part of their regulatory conditions to ensure they do so in order to deliver informed effective care
I was completely terrified, heart broken, confused, anxious amongst a plethora of other emotions throughout the whole experience and subsequently needed counselling. My daughter is alive but has various long term problems such as hearing loss and developmental delays, and under investigation for other long term effects. I would not wish anyone to go through what we experienced but if you know what to do and what to expect hopefully it will help you! This is a personal experience perspective in order to raise awareness and educate.
My daughter’s experience never ended on that dreadful day and continues now and will continue beyond. Anyone who looks at her not knowing her history would not see anything wrong with her back then, right up to now; The silent health crisis at its best. She is classed as disabled but people would never piece it together.
Beyond that day…..
She continued to experience seizures, absences, startling, jerking and evident pain which has morphed and changed over time from initially obvious seizures (Obvious to me anyway) to Petite Mals – small ones which incidentally I was not aware what they were. I mentioned each and every symptom as they had arisen keeping a note of them. But, it was not until she had one during an audiology examination with a community paediatrician that they were witnessed and explained. I had been asked to video record all incidents but frankly they are so short in duration and unpredictable I never had a phone etc with me and the trauma already in my mind would put me on red alert so video footage was the furthest from my mind. This I found very, very, frustrating because it felt as if people did not believe me again and all I ever wanted was my daughter to be cared for and well.
It took from 12 weeks old to over 18 months old before she was seen by a neurologist. We literally have one Paediatric Neurology Consultant for Wales. He is awesome to be fair BUT this to me having lived the experience is dangerous and needs to change due to the increasing prevalence of meningitis and septicaemia and their associated long term problems, which include a 70% risk epilepsy in the longer term for bacterial meningitis recovery, alone.
During the acute phase of her illness it later became apparent she has also had a right sided stroke which delayed her mobility significantly. She is 3 in a few weeks but literally only started to mobilise 2 months ago and still has an immature gait and balance issues that add to the various other factors.
She continues to smile and get on with it all though. She very rarely complains and when she does it is usually bad like a severe headache etc
She also developed bi lateral hearing loss and glue ear after the initial infection. This hearing loss fluctuates between mild and moderate depending on the level of fluid in her ears. She has been recommended for bi lateral grommets but due to her varying other medical needs this is a risk we will not currently take with general anaesthetic at this time.
She has developed long term respiratory problems and receives daily medication for asthma now, after almost 2 long years of multiple chest infections. She still awaits seeing a respiratory specialist. A very frustrating one for us because this being one of the most troublesome long term complications.
She also suffers with long term constipation despite medication and all the other interventions we have to alleviate. She experiences frequent headaches/migraines which she will at last be receiving treatment for after her next EEG.
I literally could go on and on in explicit detail of what she has and continues to endure on a daily basis, but the main fact of the matter is she is alive, she is here and that privilege is not always afforded with that deadly disease. She is my little inspiration. My warrior. My best friend. My hope. My world. She laughs and smiles and just gets on with it day in day out for the most part.
I guess my point with this story is always get back to basics. Harness your innate wisdom of knowing that your instinct, gut, intuition will always serve you well. Over centuries we have allowed our brains to be conditioned and sit back apathetically allowing life to pass us by, not challenging, not wanting to cause a fuss, wanting a peaceful life. Yet inside us and within those we love and hold dear is that peace. I am honoured to have had my daughter because it took me 37 years for her arrival. She has taught me many valued lessons in the last 3 years than I have learned in my life and will always cherish her and everyone else around me thanks to her daily inspiration.”
I’m sure you will all agree that Rosina and Bayleigh’s story is harrowing as well as inspiring. I want to say a huge thank you to Rosina for sharing their story and helping to highlight the other signs and symptoms of meningitis over and beyond the rash that we all know to look out for.
Rosina asked me to also extend thanks on her behalf to the charity Meningitis Now, who helped the family through this awful time. If you would like to know more about the illness or indeed support the charity, then please visit the Meningitis Now website and don’t forget to share this post with any parents of young children. Rosina may well save other lives from having written about their experiences.