Meningitis in your words

Elouisa Baker's story

  • Location: England
  • Categories: GBS (Group B streptococcal)
  • Age: Baby 0-1
  • Relationship: Parent
  • Outcome: Full recovery
Elouisa Baker

Our beautiful baby Elouisa was born on Friday 28 December 2007, weighing 6 pounds 5oz. She was our second child and, like her then 19-month-old sister Amelia, was born by c-section at The Portland Hospital in London.

I recovered swiftly from the operation and we went home on the Sunday, New Year's Eve. I was attempting to breastfeed Elouisa, which I was still getting used to. However, she seemed content enough, with little crying other than when she was hungry. The rest of the time she was happy to sleep in her Moses basket.

However I became increasingly concerned on New Year's Day, as Elouisa was rather floppy and didn't seem to be putting on weight.  The local midwife was supposed to visit but telephoned instead, as it was a bank holiday she wanted to postpone her visit until the next day. I voiced my concerns, but was told a degree of floppiness was normal and 'as long as she was not grey' she was probably fine. At this point my main concern was that Elouisa was not getting enough milk and was possibly dehydrated. In desperation I gave her a bottle of Aptamil and called a private midwife recommended by my obstetrician.   Midwife Arezou arrived within the hour. She weighed Elouisa and noted she had lost weight. She was concerned she wasn't latching on correctly, so helped me with this and said she would return the next day. She returned the following morning - again Elouisa had lost some weight and Arezou advised us to buy a breastpump to enable me to feed her expressed milk. She stressed that I should call her immediately should my concerns increase. 

That afternoon I woke Elouisa for her 2pm feed and her head lolled back like a doll - she had absolutely no interest in feeding.  I called Arezou who came immediately and calmly advised us that it might be an idea to get her looked at by a paediatrician at our local hospital, Kingston, where she worked as an NHS midwife. At this stage her primary concern was that Elouisa was dehydrated. She phoned ahead for us, and we bundled Elouisa and her sister off to hospital. 

Upon arrival, Elouisa was rushed through and assessed - she lay there motionless whilst 'artery stabs' were carried out to try and obtain the necessary quantities of blood from her tiny body (which now only probably weighed five pounds).   They were unable to get a urine sample and she was too tiny for their smallest catheter, so they had to put a needle directly into her bladder.  They kept giving her 'bolus' injections to try and stabilise her and we were told she was hypothermic. Still at the time I couldn't believe that she was 'seriously' ill, and was more concerned about my toddler's tea - in the haze of doctors and nurses I remember asking if we would be sent home within the hour or should we feed Amelia here?  I think it was the shock.  

We were advised Elouisa should stay on a ward for the night - at that time, awaiting blood test results, they thought she was dehydrated, however they told us protocol meant they would treat her for meningitis just in case.  This early action saved our baby's life. 

"She was far too sick and tiny to undergo a lumbar puncture"

My parents collected Amelia, and Elouisa spent the night on a ward in an incubator. However the next morning when the doctor checked her startle reflex, she flopped back, unresponsively.   She was immediately moved to the High Dependency Unit and strapped up to various beeping monitors, an IV drip and supported with oxygen.  Bundled in her (massive) newborn winter hat and blankets to keep her warm our poor baby looked so tiny.  Her 'sats' kept dropping, and as the day wore on doctors became increasingly concerned. Her blood tests revealed she had septicaemia, and doctors started mentioning meningitis, although this couldn't be proved yet as she was far too sick and tiny to undergo a lumbar puncture. 

After an emotionally draining Thursday in the HDU, Elouisa took a turn for the worse. The doctor explained there was a possibility she might not make it and suggested we call any family we wanted to let them know the situation.  They also wanted to transfer Elouisa to a Paediatric Intensive Care Unit, as she was very tiny (they said she was more like a premature baby) and they felt she would be better served elsewhere. They found a bed at St George's in Tooting and we were transferred by the High Dependency Ambulance Team which specialises in intensive care transfers. They explained that if Elouisa stopped breathing during transit they would put me in the front with the driver whilst they resuscitated her. I have never been so scared in all my life was I was during that 10-minute journey. 

Elouisa was rushed to PICU that night and the first of many platelet transfusions took place. Wires came out of every limb and our baby was fed by a tube. During her 24-hour stay on PICU a long line was inserted from her ankle to her groin, to enable drugs to be given more effectively.  Those 24 hours were touch and go - we were told babies generally go either way. 

Luckily Elouisa was progressing, so we were transferred on Friday night (when she was seven days old) to a ward. She spent the next week on the ward, being strapped up to tubes to feed her initially and give her IV antibiotics and platelet transfusions. 

On the Sunday I held her for the first time since her admission the previous Thursday and fed her a tiny bottle of milk, which she drained. Her feeding tube was removed and a lumbar puncture was carried out, which showed she was recovering from bacterial meningitis. She was still supported by oxygen, and we had many a worrying moment when the alarms went haywire to indicate a drop in her sats - at least 10 times a day. 

I stayed with her the entire time, religiously feeding her every three hours, weighing her nappies and treating her red raw nappy rash which had developed due to all the antibiotics. At this point everything hit me and I spent days in tears, unable to eat. I felt pulled in both directions, as I had barely seen my 19 month old (who I'd never been apart from previously) who was being looked after by our parents. When briefly went home to see her, I was distraught at leaving Elouisa, even though my husband Simon took over from me so she was never alone. 

The following Friday, after 10 days in hospital, I begged the doctors to let us home. Elouisa was by now recovered sufficiently that I was doing all her care, with the nurses only giving her the IV antibiotics. An arrangement was reached whereby Simon and I brought her back to St George's each evening for a week for two hour's worth of IV antibiotics. She kept her cannulas in all the time, which were bandaged to ensure they stayed in place. 

During our final week in hospital doctors explained that Elouisa could have hearing problems or even brain damage as a result of her meningitis. We had an awful week of waiting for a hearing test - she did okay, not brilliantly on the first one, so was referred for a later distraction test a few months later, which she failed. At this point we were convinced she had a hearing problem - it wasn't until she passed a further test with flying colours that we were finally told she was fine. She also failed to meet a number of milestones at her eight-week check - she was more on par with a four-week-old at this stage. Her first year was a combination of us being elated that we still had our baby and fraught with the worry that she might have some form of brain damage. 

Thankfully Elouisa is now a thriving 21-month-old. She is talking, running and a complete joy. St George's were so thrilled (and a little shocked!) by her amazing recovery that they signed her off last year, so she has no more checkups in this respect. Having conducted so much research into the long-term effects of bacterial meningitis I cannot believe how lucky we are to have a seemingly unscathed baby - we will be eternally grateful to all the wonderful doctors and nurses who saved her life, not forgetting the amazing Arezou, our midwife.  Had she not sent us to hospital, it is unlikely Elouisa would have survived and we are so grateful to her.  She also supported us with phone calls, visits and texts during Elouisa's time in hospital.

After she was discharged we repeatedly asked the doctors why Elouisa had contracted meningitis - was it something we had done?  They looked back at their records, both of my antenatal care and the various tests they had carried out on me when Elouisa was first admitted to Kingston.  It transpired these suggested I had had Strep B.  I had never heard of this before and was never knowingly tested for it during my antenatal care. 

Marisa Baker
December 2011