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.
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Guest post: "Meningitis was not on my radar at that point as she didn’t have a rash"
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MumsnetGuestPosts · 18/07/2019 10:38
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