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Ari's story

7th March 2017

At just 6-months-old Kaytee’s son Ari developed meningitis. Here 22 year old Kaytee, from Barrow-in-Furness in Cumbria, describes what happened, in the hope of helping other young, first time mums become more aware of the signs and symptoms. In particular she highlights the importance of not waiting for a rash.

Ari's story

“At 6 months old my Son Ari got a chest infection that was going around.

He seemed pretty unwell and so I took him to the doctors. They said his breathing was on the verge of being too quick, but he seemed ok so they would see him again two days later and sent him home with an inhaler. After the two days he seemed much the same, if not worse to me, but when I took him back to the doctors they told me he was okay and to carry on with what I was doing.

“Over the next few days he got worse but with what seemed different to his previous illness. He was very irritable and would not sleep for longer than 10 minutes without waking up screaming. The only way he would sleep was snuggled in my arms, which was really unusual for him, but I just presumed it was the chest infection getting worse before it got better.

“This was at the weekend and so I decided to phone the doctors on Monday, but he seemed to pick up so I left it. Then, on Tuesday evening he suddenly stopped taking his milk. He did nothing but scream and sleep, he was sleeping far too much. The following morning (Wednesday 18th Jan), he was still refusing milk. It had been over 16 hours since he had any milk or other food and drink, so I phoned the doctors for an emergency appointment.

A change in appointment time saved his life

“This was at 10am. The appointment they gave him was 4:50pm. At 10:30am the doctors phoned back and changed his appointment to 11:30am. I don't exactly know why, but I would later learn that the change in appointment time saved his life.

“The doctor said his temperature and breathing were high but couldn't see a source for infection, so he phoned the children’s ward at my local hospital and sent him straight there. I explained to them he was also having staring episodes that you could not snap him out of. He was totally unresponsive during the episodes, which they saw for themselves, but they also could not find a source of infection!

“One of the nurses mentioned that his soft spot was really bulged and so they decided to do a lumbar puncture. By this time my son had pretty much gone into his own coma. He slept through several cannula attempts and then slept through the lumbar puncture. They told me they were testing for meningitis, and I thought why? He didn't have a rash, it can't be that?

“Whilst waiting for the results my son became so light sensitive, even in his sleep, that he had to have a towel over his head. Then the doctors came in and said he had pneumococcal meningitis and he was critically ill. I broke down. I'm a 22 year old young, first time mum, who knew nothing about meningitis other than the rash, which I thought you always got with it.

All so much to take in

“They put Ari in an induced coma with tubes to help him breath, and told me that he would be transferred to Manchester Royal Children’s Hospital. It was all so much to take in. The night before he sat up by himself for the first time, and less than 24 hours later he was near death.

“He was given brain scans before being transferred and they had two failed attempts at getting a line into his leg. He still has scars where they drilled through to the bone. I honestly at the time did not understand how poorly my baby was, simply because I was never made aware of how serious, quick acting and deadly Meningitis is.

“He was transferred by ambulance to Manchester Intensive Care Unit. After a day of being there they told me that it was highly likely that he would need brain surgery. As they were telling me this he stopped breathing, they had to intervene and thankfully it worked. He stopped breathing another two times during the five days he spent in the coma. He somehow turned a corner and just missed needing any brain surgery.

“After five days, they removed his tubes and woke him up. They had to keep putting him under anaesthetic as he was so difficult to get lines and cannulas into, that they needed the extra time. They eventually got a line after three days of trying, which went through his big toe and up to his knee.

“They said his case of meningitis was so rare that he needed two antibiotics which are rarely used together. He had a month’s course, as well as seizure medicine for the vacant episodes. He spent a week in intensive care and then he spiked a temperature for days, so spent another week on the children's ward. After two weeks he was discharged back home with oral medication.

Teach him everything he knew all over again

“The doctors have told us not to worry about how this may have affected Ari, as with him being so young we won't know how his development has been affected for years. We had to teach him everything he knew all over again and we brought home a different baby. He suffers nightmares, he is clingy, he screams when he sees a nurse’s uniform, and his hearing is very sensitive to loud noises.

“Despite all that being upsetting, I know how unbelievably lucky we are to have our baby still with us, especially when he was diagnosed with literally seconds to spare. I do know that if my doctors hadn't have changed his appointment, our baby would no longer be here.

“This horrible disease causes rapid deterioration. My son went from sleepy and irritable to near death in the blink of an eye. As difficult as it may be to go over all this again, it's important that people know this. I want to raise awareness, especially for young first-time mothers like myself, who don't really have a clue. You know your baby best. If they are acting differently or irritable, take them to the doctors! Doctors understand and will always tell you that you did the right thing, even if it turns out to be nothing serious.

“Also, my son never had the rash! Please don't wait for a rash if you suspect meningitis because it may never appear! It's now one month since Ari's diagnosis and he is getting there. He is behind in his development for this age, and he is different to how he was, but he is alive! For that, I seriously want to thank all the doctors that dealt with him. You are all truly wonderful.”