Harmonie-Rose’s Meningitis Story

Meningitis Stories

Harmonie was 10 months old, she’d just taken her first steps, she was also reaching all of her milestones. Then just before she was 11 months, she caught which we thought was a normal cold, her nose was constantly running, she was just under the weather for about a week. She did seem to manage with this cold, but then one night we put her to bed and her breathing changed it looked like she was struggling to breathe so we rang 111 and took her to our local out of hours GP service at the hospital, once we sat her up Harmonie seemed to be a little better so when we got to the hospital Harmonie was ok, however she did have a high temperature. The hospital said that her observations were ok but she had a high temperature and it could be a UTI.

We went home, the next morning I went into Harmonies room and she was much quieter than usual, she didn’t make a sound. Usually, she’d be trying to sing to herself or babbling, but when I went into her room, she was quiet but awake just led on her bed, not trying to climb out like usual just led there quietly. I got her up and tried to give her some breakfast she was no crying at everything I did. She refused to drink. I tried to give her some porridge and she shook her head she didn’t want anything. Then in front of my eyes Harmonie had a fit (convulsion) and was shaking uncontrollably she looked cold and her skin was mottled. We rang the hospital again, and they told us to go there for a second time, we got ourselves dressed and went to the hospital, on our journey Harmonie was sick our thermometer was saying that she was cold.

When we got to the hospital Harmonie was quiet, she didn’t get up and play she just led on our laps. The doctor saw Harmonie and said to continue with Calpol and Ibroprofen as they watched Harmonie improve with Calpol.

We decided to go to Harmonies nanny’s because we thought that she could have a sleep in her travel cot and we wouldn’t be alone to look after her. For some reason Harmonies nanny went to see Harmonie as we had popped to the shop, and she just picked her up and brought her downstairs, Harmonie still wasn’t right and when we got back from the shop, we took her straight back to the hospital. Nothing would entice her to play.

We had an instant access card to the children’s ward now so we rang to say we still weren’t happy and that we were on our way up, we were put in a room and the nurses were doing observations on Harmonie, we were trying to get a urine sample but it was so tricky. I gave up with trying because she just didn’t seem very well at all and was getting upset about being sat up, so I thought I’m going to lie her down because that’s what she wants to do!

Again, when she was led down she started doing that strange breathing again, so I lifted her up and she was sick over the bed. I called the nurse in to help me sort Harmonie out and as I looked up I saw she had a purple mark appear on her nose.

So I showed the nurse and said this wasn’t there a minute ago, with that she looked and she pressed the emergency bell. The room filled with nurses I just watched helplessly as my baby’s body was turning purple the rash was small pinpricks that were joining together and making a cluster, changing her skin to purple. It was all happening so fast the rash was taking over her body.

The room was filled with so many nurses.

I knew when I saw the purple mark that it was meningitis. It’s every parents worse nightmare it was happening in front of my eyes.

She had all her vaccinations and everything was up to date so I thought she would be fine.

The next part is a bit of a blur, but we were told that Harmonie needed to be transferred to a hospital who could offer everything she needs, they told me she was going to have to be put to sleep to help her get better.

Harmonie was transferred to Bristol Children’s Hospital but she was so poorly they had to carry out manual intensive care in the ambulance.

She was taken to PICU and that’s where she stayed for the next four weeks.

We were told that she wasn’t going to survive and from the very beginning they told us if she was to survive, she was going to lose digits.

The first few days in intensive care were so tough and scary, we had her baptised we were so worried. There was no hope. As the days went on Harmonie was still here and I knew that was a good thing.

We found out that it was meningococcal septicaemia type B and that the government that year approved the use of the vaccine for babies but didn’t bring it in the national immunisation program because of cost.

If Harmonie had been given the vaccine, then she wouldn’t have caught it or it wouldn’t have been as bad as it was.

Harmonie was on so many medications supporting her body, her kidneys went into complete shutdown she was on medication to support every organ and every part of her body. The days went on and the rash turned darker, her arms and legs were now a solid hard shiny black.

We knew they were gone, but we wanted her any shape we didn’t care.

Harmonie was still fighting and we had so many bumps in the road, the doctors didn’t give us any hope and ‘quality of life’ was mentioned quite a bit. Harmonies brain scan showed that her sight, hearing and motor skills had been affected so they knew she was going to be the same Harmonie that had arrived at the hospital when and if she woke from her coma.

She did, and since then Harmonies been thriving, she can swim, she does gymnastics, goes to school, goes on holidays she’s also won a fair few award too!

Harmonie had to have both her arms and her legs amputated so everything takes her a bit longer or she has to find her own way of doing it. But she does she smashes it head on.

Pictures courtesy of Harmonie-Rose and her family

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