Our daughter caught meningococcal B septicaemia and meningitis when she was nearly seven months old.
I was out for lunch with a friend and her baby. Miko, my daughter, was not her usual self and didn't want to eat which was very unusual. I took her home and she started to develop a temperature. I gave her paracetamol which seemed to help a bit, but she wouldn't stop crying. I could not have any idea what was wrong with her but I didn't want her to be in pain and hoped for the doctor to be able to help.
The doctor looked at her and asked me about some pinprick spots that were under her arms and on her back. I had not seen them before. The doctor told me to go to the A&E "simply to rule some things out".
Once I got to A&E they did the usual tests: urine, blood. Miko was given more paracetamol, the doctors looked at her spots and thought they were disappearing. Her temperature went up and down and finally she seemed a lot better than when we got in. So the doctor sent us home after spending many hours there and told us to come back in the morning for a check-up.
We kept Miko in our bed that night. She cried a lot, her temperature continued. She was not getting better and she was crying in a way that I have not heard her cry since. When people ask me how we knew something was seriously wrong I reply: in her crying. But being an inexperienced mum then you don't know that your baby is not supposed to cry "like this". But mums out there reading this: "if your baby has a high pitched cry for a while take him/her to see the doctor immediately!"
Miko was very ill and we took her again to the A&E much earlier than our appointment. The nurse came to see us. And this is also the second when a switch was flicked and our lives were to change forever. The nurse, Ben, listened to her heart and immediately took her to a room, her heart rate was over 200. He called for the doctor, gave her oxygen and hooked her up on monitors. The doctor wanted a more experienced doctor, more doctors arrived and slight panic started to spread. They got lines in and started to give her medication. People were working fast. In the midst of all of this we tried to look calm for Miko so she wouldn't be scared. Miko was sleeping, Ben stayed with us for hours in resus holding her oxygen mask over her face while we waited for a bed.
We got a bed in isolation in HDU. Miko would not wake up. Doctors came in and pinched her nails but she would not react. They looked at her eyes with torches. They asked questions about if she recognised us when she woke up, but she hadn't been awake. The drip made her body blow up, but she kept sleeping. I slept on two chairs next to her and my husband went home. It was desperate days and nights and Miko's heart was racing while asleep. When I lay next to her, her heartrate went down a bit.
After three days she woke up and started to look better. We were moved out of HDU into a cubicle. And finally we got the result back from her blood test; meningococcal B. With a diagnosis the doctors could focus on the right treatment, but Miko was already feeling better. My husband and I were given some tablets to take meningococcal B away from our bodies and things started to look up. The doctors send us home after a clear lumbar puncture on the Friday and we just had to come to the ward every day so Miko could finish her course of antibiotics. We had been admitted on a Saturday and already home by Friday, we felt very lucky.
But Miko didn't really get better from there. Her temperature went up and down, she was really uncomfortable. We saw the doctors every day on the ward for injections, and every day we also went to A&E because we were not 100% with her. We were there Saturday morning and again Sunday morning and we were sent home.
Sunday night at 9.30pm she suffered her first seizure and we called an ambulance. Her tiny body was shaking and she was foaming around her mouth. The ambulance arrived after what seemed a very long time (in fact it was less than five minutes). The doctor threw his bags on the floor, took Miko out of my hands and immediately gave her oxygen. He then picked her up and we ran down the stairs. A neighbour was on his way into the block and he looked so scared.
They tried to stop the seizure in the A&E but ended up having to intubate her. We sat by and watched an ever-increasing number of people helping Miko. People introduced themselves, explained what they were planning to do and how they expected her to react. Sometimes we were sent away to another room and the doctors would come there and tell us what they were doing. My husband and I tried to comfort each other, which was impossible. When we saw her again after she was intubated she was on an inflatable heated mattress. She had a tube down her throat and her mouth was closed with tape. She had a catheter, her blood pressure was measured directly in her vein, she had several lines and of course the monitors. By then by she was stable and the atmosphere was more relaxed. I felt people's eyes on me but when I looked at them they looked down. I felt like being in private to grieve. We were moved to Great Ormond Street for PICU. We drove slowly, silent with the lights on. It was now 3am.
We stayed at GOSH for two weeks; two nights in PICU followed by a stay at the infectious diseases ward (the Robin ward), followed by another two weeks back in our local hospital, spending five weeks in hospital altogether. She had a Hickman line inserted as all her veins were exhausted, and had one blood transfusion. Miko suffered more seizures, one more prolonged (50 minutes) and only stopped as they were unpacking tubes to intubate her again. All her brain scans and EEGs came back with a normal result. Her hearing is perfect. She was a bit behind in her development simply because she was not stimulated as much during her long stay in hospital. She is the cutest little button and I think that every time I hug her I squeeze her a bit more because I get reminded I could have lost her.
Meningitis is a devastating disease and it so difficult to diagnose, yet the most important thing with this disease is fast treatment. Though a lot of us fear meningitis that is a long way from actually suspecting it in yourself or people around you. But the truth is you cannot know how and who it will strike. Our little girl had it twice (she had viral meningitis when she was only three months) and the doctors cannot explain why. "Bad luck" they say. And it's so true; a bit of bad luck is all it needs to take.
Miko had maybe six pinprick spots that could have slipped even a trained eye. And if the doctor sends you away but you don't feel any better or have a little voice inside you that keeps nagging you, then go back to the doctor or see another one. If you feel you need reassurance then you should get it! The doctors are much more happy to send you away again than seeing you very sick later on.
Miko was an outpatient for about one year after being discharged. We were mainly keeping an eye on seizures and thought we spotted her having "petit mals" or "absence seizures", which our doctor says she may very well have had. But today she is a picture of health with just two small scars from the Hickman line; we call it her "tickle point".
Looking back then Miko could have died three times in the two very intensive weeks and I think one time was very close. I am ever so grateful of course to have her here healthy today! And I urge never leave anyone alone that shows the symptoms! Stay with them and keep an eye on them, even if the doctor sends you home. This disease can move fast and take everybody by surprise.
I appreciate the Foundation and it has supported me on several occasions with very practical advice. I have been able to discuss things with people there before speaking to a doctor while we were outpatients. I am hoping to be invited to the training for the befriender programme at some point and so can make use of our own experience and support someone going through a similar experience.