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Sebastian's story

11th May 2016

Bristol mum Michaela’s baby son Sebastian developed a range of symptoms in May 2015, including a high temperature, unusual cry and vacant stare. He wanted to be comforted but cried when he was touched. He had contracted MenB, the start of a roller coaster ride that is still affecting the family today. Michaela recounts their experience

Sebastian's story

“Sebastian was a very happy, smiley baby who never cried. We didn't notice anything at the time to be honest - it's only now looking back at pictures we have realised.

“On 20 May my nephew was born - such a lovely day. Sebastian wasn't his usual self, so we didn't attend the baby massage class but stayed at home with lots of cuddles and sleep. I remember my husband, Ben, going to work and coming home and us being in bed still - that was a 12-hour shift.

“He hadn't eaten anything, refused milk, and didn’t want water. But his nappy still had wee in it. My friend came over, as I was arranging a surprise 30th for his daddy. Sebby had a few oz of milk and I left him sleeping on daddy's chest.

“I hadn't been upstairs any longer than 10 minutes when I could hear this awful squealing noise. I ran downstairs to find my husband trying his hardest to comfort a very unhappy Seb. He started to shake, we looked at each other and said ‘let’s do his temperature.’ We agreed if it was above 38 we would call for medical help. It was 38.8 so we called 111.

“They asked a load of questions but at this point he started to fit. The operator could hear Sebastian in the background and booked us an emergency appointment at our local walk in centre. They told us not to put him into his car seat but to hold him close and make sure I was wearing my seat belt, leave him in his nappy and put a blanket over him.

Started screaming again

“We sat in a waiting area with other people waiting our turn until he started screaming and projectile vomiting again all over the waiting area. Extremely worried my husband went to the desk for tissues to try and clean up the mess. We were told to leave it and a doctor was right there to see us. They did checks and said they would give him some nurofen in the hope it would help his temperature, as he'd not long had calpol and couldn't have anymore.

“No sooner had it hit the back of his mouth than it was back up, all over my husband, doctor and chairs. Another doctor was called in for a second opinion. They both looked at each other and said ‘I think due to his temperature we should refer you to A & E, just to be on the safe side.’ With that Seb started to vomit again.

“They called for an ambulance which took two hours - the longest time of my life (because we were classed as being in a safe place with medically trainer doctors). We got into the ambulance and I was embarrassed, smiling away at the paramedic like Sebastian was completely fine.

“When we got to the hospital we were told to sit in the waiting area full of other people with babies and children. I didn't think anything of it and thought at the most it would be a bug.

“The doctor came out with the paramedics, who handed him over, took one look at him and took someone else out of a bay to put us in it. For the next four hours we sat holding his hand while he slept. Waiting for a wee at this point I realised his nappies were bone dry! Nothing not even a drop. We had to do a sheet where we gave him 5ml of water in a spring every five minutes, even if that meant waking him. And if he vomited we had to note it down. They took blood samples and the test came back as an infection. Not too high and nothing more than a bug we thought. But they asked us to stay in the observation ward.

Begged for a side room

“Sebastian was screaming all night and all day. I even begged for a side room that I would pay for just so the poor children on the ward could get some sleep. They apologised a lot but they were already full with children who couldn't share due to their illnesses.

“Anyway, after a long stressful night for both myself, my husband and Sebastian, the doctor came to see us. She was happy. She said if anything was going to happen it would have presented within 24 hours, which it had been by this time. She said she would write up Sebastian’s notes and then we could leave.

“He was still screaming but not vomiting, very hot to touch and a heat rash appeared on his arms and legs. I asked a nurse who said ‘it's just a viral rash, it's completely fine, don't be alarmed.’ I was not happy. I went outside leaving my husband with our son to ring my parents and let them know what was happening. I was gone just five minutes, but when I returned they had gone.

“I asked reception and she calmly took me back into the observation ward. I said we're being discharged and were just waiting. I was taken to this side room, thinking what an earth is going on? He has a bug, why is he being separated from other children?

“I walked into this room and there's my son, hanging over the cot with a doctor patting his back while sick just pours from his mouth. This was the fluids, the water we were springing into his mouth. My husband had no clothes on his top half where he had been covered in sick and they rushed them both back in with the help of doctors and nurses attending to our son. Sebastian was again stripped down naked and his skin was this awful purple/blue colour - I will never forget it.

“The doctor asked ‘does his skin look a normal colour to you?’ ‘No’, we replied ‘he looks bruised.’ ‘Well,’ the doctor said to Sebastian, ‘Oh you poor baby, you really aren't very well are you.’

Something about his stare

“At this point he was calmer, lying on his back just staring at her. They did more blood tests, but then she said ‘I would also like to do a lumbar puncture.’ I said ‘really, is that necessary? Isn't it really painful for just a bug?’ She said ‘there is something about his stare - it's giving me the willies." Her words, so we agreed.

“Overtired and not really thinking, we didn't think about anything other than how can one bug be making him this poorly. Ten minutes felt like forever. They brought him back and said the test results will take 24/48 hours to come back. But we are going to start antibiotics and fluids now.

“We were very confused and said ‘what do you think is wrong?’ She said she wasn't sure and not to worry, just wait and see what the results say. My husband then went to ring my parents and ask them to come into the hospital so we could get a coffee, as we needed five minutes away. My parents had no idea what they were walking into.

“We went to grab something to eat and a coffee two hours after the lumbar puncture. We're on our way back to our son when I get a phone call from my mum asking us to get back as soon as we can as another doctor is there. The doctor waited for us to arrive. My parents were guardians while we were away, so any decision was in their control. They had already been told the news.

“The look on my mum’s face I will never forget - she couldn't look me in the eyes. Tears were streaming down her face. I looked at the doctor and said ‘what is it? What's happening? We were going to be sent home four hours ago with just a bug.’ He said he had never seen a baby of his age fight so much and it should have started to take over 24 hours after the first symptoms.

“’Bacterial meningitis B’, he said. ‘We've already started antibiotics for it and he should be okay, but of course we can't say with 100% certainty.’

Arrange medication

“He also told us health officials would be in contact with us to find out where we have been in the last week and who has been in contact with Sebastian and to arrange medication for everyone who could have infected or been infected by him.

"Have we infected him?" I asked. Apparently we all carry it within the back of our throats but it's doesn't affect us; we are simply a carrier. It could have been either me or his daddy, because we put his dummy teats in our mouth. So don't do it!

“The doctor said we were very lucky as less than 30 minutes later and the rash would have started to show. At this point it is critical - the patient will or will not survive. Seven days in hospital and he finally came home. A district nurse came out every day to finish his course of antibiotics.

“The original female doctor, whose shift had finished by the time we got the results, came in to talk to us and answer any questions or concerns we might have.

“Sebastian is now a happy 16-month-old, with all of us wrapped around his little finger. We are just so very grateful to all the wonderful doctors and nurses who helped over the stressful and truly hard time. He has just had a hearing test and been signed off. They say it's a waiting game as he might have no effects from the meningitis but they won't know until he starts attending school.

“The worry never ends. We have also been told that because he has had it once it doesn't mean that he can't get it again!

“I hope to attend a Meningitis Now Family Day providing our second son doesn't make his appearance - we are due on 25th May. The meningitis experience has left me with very bad agoraphobia though. I don't take Sebastian anywhere where germs can be. If I go to a soft play area I disinfect everything before he touches it. I get some funny looks so I don't go often now.“