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Mark's story

Haemophilus influenzae type b (Hib) meningitis; one mother’s experience.

"Saturday morning - 13 month old Mark seemed to be cold and shivery when I got him up. He consumed the warm milk from his bottle with his usual enthusiasm, but then turned very pale and vomited what seemed like all the milk. Following this he seemed a bit more sleepy than usual for the remainder of the day, otherwise he was his normal self. Maybe if it had been a week day I would have taken him to the doctor, but as he was our fourth child, I was aware that sometimes toddlers had a sleepy or off-colour day (presumably to help fight infection) and then improved next day.

Sunday morning - We were woken early at 6a.m. by Mark crying with a distressed/pathetic type cry - (unusual for him, he usually played happily in his cot until we were ready to get him up). He seemed very hot with a high temperature, so I gave him paracetamol & a tepid sponge as my philosophy was if that didn't help then call the doctor. (No A & E Clinics except at the hospital at that time). After 30 minutes he did seem more comfortable and went back to sleep.

Mark woke up again 2 hours later and as I went into his room he began to have a convulsion. We phoned the duty doctor; (incidentally the doctor’s wife answered the phone and said "they're up and down so quickly at that age" - more or less implying that I was over-anxious!) and I requested an urgent house call. While waiting I changed Mark's nappy and noted that lifting his legs caused him distress and wondered if that might be a sign that he had meningitis.

The doctor duly arrived and diagnosed pneumonia and said that it was better to treat it at home rather than hospital. I queried the possibility of meningitis but was told that the fever was causing Mark's nervous system to be irritable. My husband got the prescription for antibiotics straight after and we got Mark started on them, but I stayed in his room & watched him closely, such was my concern. His breathing remained rapid for about 3 hours then suddenly changed to being unusually slow and he remained drowsy. I phoned the doctor again because I was sure this change in Mark's breathing meant something serious, and the doctor's wife again queried the necessity for another visit "because the doctor is in the garden and would have to change his clothes!" I stood my ground and the doctor arrived and pronounced Mark improved thanks to the antibiotics (he believed that was the reason for the breathing being slow) and then he left to go back to his garden.

I still felt extremely worried about my baby - and left my husband to care for the other three children while I just sat & watched over the sleeping Mark. ("sleeping" should probably read "comatose" with hindsight). After another hour or so Mark started to convulse again, but this time the convulsion didn't stop but intensified. I had called out to my husband to call the doctor again when the fit started, and then I yelled out to call the ambulance as well, and then also asked him to phone my mother to come and help with the other children. By this stage Mark was having what I now know to be grand mal seizures including fitting to one side (due to him also having a stroke). He was turning blue and yet I could only contemplate resuscitation as the violence of the fitting meant I couldn't get close enough to him - and even when I got my husband to try and restrain him, the contortions of Mark's face & mouth meant that it was impossible to get any sort of effective seal for CPR.

The doctor arrived, and almost straight after that the ambulance came. The doctor (with very trembling hands - I'll never forget!) gave Mark an injection of paraldehyde and he immediately stopped fitting and went very limp. They then gave him oxygen and got him off to hospital at high speed & with the siren going non-stop (this was just before the current procedure of stabilising the patient before transporting them to hospital). My mother arrived at the house just as we were leaving, and she later told us that she overheard the doctor on the phone to the hospital saying that he "was sending in a moribund baby!"

We soon found out, after lumbar punctures & blood tests, that Mark was critically ill with haemophilus influenzae type b (Hib) meningitis - he was in grave danger of dying and even if he lived was at high risk of having permanent neurological damage. He had also suffered a right-sided stroke and had pneumonia throughout both lungs. He was given medications through an intravenous line. We felt so helpless - and in desperation called in an Anglican priest we knew, who prayed for Mark.

There followed a week where Mark remained on the "critical" list and was ‘specialled’ around the clock. After almost a month of hospitalisation including repeated IV insertions, blood tests, lumbar punctures, plus other minor hospital-acquired infections, Mark was deemed well enough to continue his convalescence at home. This was great news but by then we were exhausted with the stress of managing the rest of the family, housework, one of us being with Mark at the hospital etc.

We are thankful that he eventually recovered well, although complete recovery took another two years or so. It left him with asthma, presumably from sensitive lungs after pneumonia, and with temporary balance problems and altered personality - the easy-to-manage infant became the ‘enfant terrible’ including regular head-banging sessions, putting great stress on our family life.

Yes, we were very fortunate to eventually have a good outcome, but if only there had been the option at that time to avoid all that suffering. Immunisation to protect from Hib disease - as is possible today, was not available then. It was an experience that Mark and all our family would have preferred not to have had!"

This story was written by Mark’s mother, Elaine , following a videoed interview for the Piercing Memories project, and is posted on IMAC’s website with her consent. The interviewer was Elaine Ellis-Pegler.

Last updated: Jan 2017