Meningitis in your words

Aimee Heath's story

Location: England
Categories: GBS (Group B streptococcal)
Age: Baby 0-1
Relationship: Parent
Outcome: Recovery with after effects
After effects: Co-ordination problems

Finding out I was pregnant was the most exciting thing that could happen to me. Leading up to the ‘big day’ was brilliant. Buying all the baby related things with my sister who also found out she was expecting too. I loved every minute of being pregnant and even enjoyed going into labour.

Cradling my new born baby girl, Aimee, who weighed 6lb 6oz, I was over the moon, but on the ward things didn’t look too good, my baby was screaming and wasn’t feeding.What’s wrong I asked? They just told me that she was newborn and adjusting to the world.

The next day I took her home accepting what they had said to me but at home things were still the same, Aimee continued to scream and not feed well.

"Don’t panic" my mum said, "you have the paediatrician appointment tomorrow and they will check her over". Anxious, we went to the three day check with this burning question, "is she ok?"

"Aimee, instantly she became floppy and very hard to wake up"

They did a heel prick test as Aimee was very jaundiced. It took two attempts as her feet were very blue and her blood was as dark and thick as tar. As the paediatrician checked everything we told her about Aimee feeding and her crying and again we heard 'newborn behaviour'. We took her home but this gut instinct inside told me to tell the midwife something wasn’t right.

As the midwife arrived on day 5 she held Aimee, instantly she became floppy and very hard to wake up. "I’m calling an ambulance". A lump came to my throat. The ambulance came and we went straight to the paediatric ward. The nurse tried her with some milk and she seemed to perk up. "We’re just going to do a heel prick test because of her jaundice and watch her feeding and you can go home", For a moment I felt relieved, but it wasn’t for long. The doctor came back and said,"we will have to do a lumbar puncture." Not knowing what that was, I agreed. Hearing her piercing screams sent a shiver down my spine. As soon as she came out of the room they whisked her away to the high dependency room:. "Your baby has meningitis". My world crumbled around me; I was in utter shock. "How? Why?" All these questions were running round my head. The next 24 hours were to be crititical. I did not sleep and sat by her side and didn’t move from that spot. Tubes were running in to her tiny body, pumping antibiotics and anti convulsion medication. She had a feeding tube fitted too, to give her lots of fluids and keep her hydrated. Aimee had 3 fits and they were very scary to watch. But as the next few days progressed her stats improved. My little baby girl was fighting back.

"Aimee ... has specialised equipment to try and help her sit, stand, bathe and sleep"

They found out what type of meningitis and septicaemia she had. It was bacterial Group B streptococcus and what was worse is that I passed it onto her in labour as I was the carrier.

Over the next 3 weeks, the hospital was my and Aimee’s home. Every day she showed improvement and signs that she was getting better. We were limited as to the number of visitors and I felt very lonely and isolated in a very tiny room that had two small windows looking onto a roof. She had a few cranium ultrasounds to determine what damage, if any, the meningitis had caused. The results came through that she had scarring but they did not know what this meant until she was old enough to have an MRI scan and they could see the brain in full.

On 18 August 2011, Aimee was discharged from hospital; she had beaten this horrible illness. I needed to know how I passed it on to her so I searched the internet. 1 in 4 women are GBS carriers and do not realise as they are NOT routinely tested. Simple antibiotics as I went into labour could have prevented my little girl from fighting for her life.

Her consultant has told me that she has Quadriplegic Spastic Dysarthria Cerebral Palsy as a result. She also has Pseudo bulbar Palsy, a medical condition which means she has an inability to control her facial movements (such as chewing and speaking). She has asthma and has regular chest infections, and her eye sight is weak and she can’t see long distance. Aimee is non Verbal and cannot communicate. She is delayed in her milestones, especially concerning the development of her muscles. Aimee has trouble feeding which has been investigated since she was 6 months old. She had to be NG tube fed for a while and has now had an operation to be fed straight into her stomach.

Aimee is under a total of 14 health care professionals and has specialised equipment to try and help her sit, stand, bathe and sleep as well as having a special pushchair being moulded for her body.

Aimee is 3 years old and the apple of my eye, and she is doing well, but her life will never be the same as other children because of this terrible disease.

CHARLOTTE HEATH

OCTOBER 2014