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Bex and Emily's story

9th August 2019

Bex’s one-year-old daughter Emily had a range of symptoms including lethargy and a stiff neck. Despite these and suffering seizures she was discharged twice from hospital and it was only on a late night third visit that her meningitis was suspected and successfully treated

Bex and Emily's story

Thankfully, despite only being given a 5% or maybe 10% chance of survival, Emily went on to make a good recovery, as Bex, from Glasgow, recounts here.

“On 10 October I picked my daughter up to realise she was pretty ill. I rushed her to the hospital as any mother would do. They took her straight to resuscitation. Her temperature was at an astounding 41 degrees. At that point she went into an absent seizure, my daughter was lying lifeless in my arms while everyone rushed round about her."

“I knew she was seriously ill but no-one was telling me what was wrong or what was going on. It was hell. To my shock, she was discharged two hours later."

“When we got home she went to sleep, and slept for the rest of the day! That night she was rushed back into hospital, where they checked her over, brought her temperature back down and again, discharged her the next morning."

Fell asleep for three days

“From the morning she was discharged she fell asleep and for the next three days she slept. Overall she slept for 100 hours without wakening properly. Within that space of time she had a home visit from her doctor, who said just keep doing what we're doing with the Calpol and ibuprofen and that it was just a bad virus."

“I was not happy. My child had slept for 72 hours by this point, not eaten nor drank anything and no toilet business at all! This was not right in my eyes so I didn't settle. I knew this was something more serious."

“On the third night she woke! I was so happy. Words could not express my joy at my baby girl waking up, but things very quickly went downhill. She could not speak, her eyes were squinting and just minutes later she fell back asleep. Just an hour later I felt her fontanelle and it was swollen so much. I knew instantly then what was wrong but I talked myself out of the worst case scenario. I kept calm, we wrapped her in blankets as it was 1 in the morning and we got her into the car and we left."

Straight back to hospital

“We took her straight to the sick children hospital and she was seen immediately. They took us in to the treatment room where they took her stats. Her blood pressure was so high she was barely responsive and limp. This for any parent is your worst nightmare. We had been seen by doctors, consultants and nurses and two hospitals! I kept asking myself, "How did it get to this?""

“The doctor entered the room and did a lot of tests, blood tests mainly. And at that point that’s when I said to him, "I know what’s wrong, she has meningitis doesn't she?" His response to me was to say "Wait until the results come back but it was looking very like meningitis". Hearing those words over in my head slowly killed me a little bit more inside. How did this happen? How did they miss this?"

“They took us along to a special room, made us as comfortable as possible and we just had to wait! We tossed and turned and cried and then got hysterical and then calmed down and then cried a little more. What felt like hours later a very small quiet little man came in to see us... he introduced himself and told us that he was the man in charge and he would do all he could to save Emily."

5% maybe 10% chance of survival

“As you can imagine we had a great number of questions, but our main questions to the consultant were "How serious is this and what’s going to happen next?" He said, "I can't lie to you or sugar-coat this, your daughter is seriously ill. We are looking at a 5% or maybe 10% chance of survival at the moment. She will be taken for an immediate brain scan now and we will determine how much fluid is in the brain, and determine how we will treat her"."

“So little survival rate? This was beginning to feel like a very bad nightmare! I wish I could have woken up and realised it was all just a horrible mess of a dream, but unfortunately this was real. "How am I going to cope? I can't do this! My baby!" Questions screamed in my head but my mouth was numb, I couldn't speak or breathe. I was numb!"

“They took us down in the big noisy silver lift, they briefed us on what they were going to do and that she wouldn't feel a thing. We had to wait outside. I could hear her whimpering. I was slowly falling into a pit of despair. By the point I was beginning to lose the will to live myself. "Why was this happening to us?" I kept asking, "I love her more than life itself"."

Medicating for viral and bacterial meningitis

“Some 15 minutes later the consultant came out and explained to us that there was a lot of swelling and pressure in the brain, which meant they couldn't do the lumbar puncture. They needed to do this to determine what exactly it was we were faced with and dealing with, or that’s what they thought. They took us back up to our room where they settled us in again. The nurses came in and took more blood and put her on her drips. They were medicating her for viral and bacterial meningitis and put her on a saline drip too."

“Two hours later the consultant came back. He sat down on our bed and the words "I’m so sorry to have to tell you this" came out of his mouth. I sank on the bed, hoping and despairing that a big black hole would just swallow me up. "We are dealing with meningitis, we still don't know 100% what type yet but her blood results came back. We do not need to do a lumbar puncture as it’s shown that 93% of her blood is infected. All we can do just now is wait until we can identify exactly what kind and treat it correctly, but she has both antidotes going through her just now so hopefully it will kick in soon"."

“We sat and just stared at her. We cried for hours and hours. We never slept. My question was, "If this doesn't work what else can we do?" His response to us was brutal. He made us aware that if this doesn't work, nothing would. Emily was on the strongest level of antibiotics possible. It was 90% Domestos going through her. She smelt like bleach!"

And then I heard it…

“How did this happen. I was angry, destroyed and hurting more than words could explain! And now it was another waiting game. The next day they came in and told us it was meningococcal septicaemia. Was she going to lose limbs? Sight? Hearing? Was she ever going to be our normal healthy baby again? At least now they could treat her properly and efficiently couldn't they? It was just a waiting game. It was all just a waiting game! What was going to happen next? So many questions but so few answers."

“We paced for days, feeling helpless and wrecked as we watched her lying lifeless. Nurses came in and out every two hours checking her, more medicines, more bloods and more stats. I just wanted to take her home! I wanted my daughter back! I just wanted to hear her wee voice, it was killing me. I was just a shadow of the woman I used to be. I was a walking lifeless body. How did so many professionals miss this?"

“And then I heard it. I was lying on the bed and my partner was lying with his head on her cot bed. I heard her say his name. I sat bolt upright! Was I dreaming? I saw him, a tear rolling down his cheek. Then it was again his name, then mine. NO WAY! I ran over to her side, as she turned her head and gave me the tiniest little smile. Up until this point we had no idea of the damage."

“She had to learn to walk again and eat and talk, but she made a full recovery. She showed no signs until it was almost too late. We are very blessed to have her here today.”