“Our wish now is that we do all that we can to spread the knowledge of the symptoms of meningitis.”
“I was on holiday in Phuket, Thailand, when I called my daughter Charlotte and she told me that her 6-year-old daughter, my beloved granddaughter Niamh, was unwell.
“Niamh had been complaining of a headache and, what alarmed me at the time, had been saying that her neck was hurting. Niamh was also tired, grumpy and lacking in her normal boundless energy.
“Charlotte was very concerned but, until I used the words, ‘This could be meningitis’, she had never heard that a stiff neck could be a symptom.
Called 111
“She called the NHS 111 helpline and was told that an ambulance was needed but that it would take six hours. Charlotte immediately put Niamh in the car and set off for one of two possible local hospitals. We discussed which would be the best option but went for the largest hospital.
“For the rest of our lives, we will wish that we had chosen the other hospital. I am still so angry when I recount Charlotte and Niamh’s experience in the A&E department at that first hospital.
“The department was busy and it was standing room only. There was a nurse triaging patients. When she came to Niamh, she repeatedly dismissed Charlotte’s concerns that Niamh could be suffering from meningitis and went as far as to categorically insist that she did not have it and simply had a virus.
“Charlotte was told, unofficially, by this nurse that Niamh would be better off at home as it would take many hours before a doctor would see her. Niamh had a temperature of 39.2 degrees and was given painkillers.
"Charlotte came away feeling relieved and reassured, as was her father who had been helping to take care of Niamh at home. Niamh also improved a little after receiving the paracetamol.
Troubled
“I was still feeling strangely troubled in my hotel room in the middle of the night and with a six-hour time difference but wondered whether I had caused my family to panic unnecessarily when I was so far away and could not see Niamh for myself.
“The following day my husband and I were due to fly back to the UK. I messaged Charlotte to ask how Niamh was and found it very odd that Charlotte had still not seen my message a few hours later when we were about to board.
“This was very unusual and, although she had initially let me know that Niamh’s symptoms had improved after taking the painkillers, something just didn’t feel right.
“It wasn’t until we landed at Heathrow, almost a day later, that I had an urgent message from Charlotte and discovered the reason why she had not responded to me earlier. Her silence had been deliberate and, as a kindness to me. She did not want me to know the truth.
Unbearable
"At the very moment that I had messaged her when I was still in Thailand, my poor daughter had been at a different hospital with Niamh battling for her life. Charlotte did not want me to know because she knew that we would soon be boarding a long flight and would be out of contact for so long, something she knew would be unbearable for us.
“I thank God every day that my daughter trusted her instincts and got Niamh to the second hospital when she still appeared to be unwell. Within minutes of them arriving at A&E, Niamh rapidly deteriorated and fell unconscious. From what we understand, if they had arrived even a few minutes later, we could have lost Niamh.
“She was suffering from bacterial meningitis and it was eventually diagnosed as a very nasty strain.
Incredible care
"It is thanks to the incredible care of the hospital team that looked after Niamh that we have just enjoyed a most treasured and emotional celebration for Niamh’s 7th birthday. We will never forget what they did and the care that they took, often staying on many hours after shifts had ended until it became clear that Niamh was going to make it.
“Niamh underwent weeks of painful treatment. There was one very difficult day when even her doctor was in tears over the pain and distress that Niamh was suffering.
“The trauma of the experience has taken its toll on Niamh. We are praying that the after-effects she is still experiencing will subside in time.
“Niamh’s emotions have see-sawed over the past few months and, at times, her behaviour has been challenging. She struggles to handle her emotions. It is early days but we are hoping that she is now starting to settle down a little.
“Niamh has other issues (potentially ADHD) and the meningitis seems to have made these a lot worse. Caring for Niamh's needs, particularly in the first few months after her illness, took its toll on those closest to her.
Brave
“I cannot begin to describe how I feel as a grandmother having two of the people I love most in the world go through such a traumatic experience that almost ended so very differently.
“Niamh was so incredibly brave and, as for my daughter, she bore the worst hours of her life on her own at the hospital because she wanted to spare her family pain until she knew what the outcome would be. I will always be in awe of her courage, bravery and selflessness.
“Our wish now is that we do all that we can to spread the knowledge of the symptoms of meningitis, one of which can be a stiff neck.
“Charlotte has checked with many friends of her generation (in their late twenties) and many have said that, like her, they were not aware that a stiff neck can be a symptom.
No rash
“Niamh didn’t have a rash – many sufferers don’t – and it seems to be a common misconception that, if there isn’t a rash, it can’t be meningitis.
“We do have one more piece of advice and it is this - you know your own child better than anybody. Do not be afraid to stand your ground and ask for a second opinion if you are not happy.
“I think it is fair to say that we are all far more conscious now of how precarious life can be and how quickly things can go wrong. We also feel enormously fortunate and blessed that we still have Niamh with us. We are acutely aware that other families have not been so fortunate.”
