Meningitis in your words

Eleanor Taylor's story

  • Location: England
  • Categories: Pneumococcal
  • Age: Child 6-12
  • Relationship: Parent
  • Outcome: Recovery with after effects
  • After effects: Other
Eleanor Taylor

It's been such a long long journey for all the family. 

Eleanor was diagnosed with pneumococcal meningitis at eight years old and for the last 18 months she has undergone five open heart surgeries to correct the damage caused.  

It started with:

  1.  Aortic and tricuspid infective endocarditis 
  2. A ross procedure, tricuspid vegectomy and VSD closure in June 2007
  3. Closure of LVOT-RA shunt June 2007
  4. Permanent endocardial pacing system installed August 2007
  5. Repair of aortic value December 2008, which was a disaster, she was in theatre for 27 hours, I have never felt so lost in all my life. 

We were advised that her heart had failed and the only way for her to stay alive was to insert a BiVAD, until a new heart became available.  We were completely gutted, not for us but for her. What did any of us do to deserve all this? She certainly didn't. 

She was in a complete coma for three weeks, but we stayed by her bedside the whole time, talking, talking, talking. Then we received the phone call for the heart transplant. She was transferred to Great Ormond Street Hospital for the operation, number six. It was a success and she spent three months in GOSH recovering; it took so long because she was so sick pre op. 

"I still can't believe the journey we have all been through."

But now she's 10 years old and at home recovering before she goes back to school.  I still can't believe the journey we have all been through. Her brother and sister at last have their big sister back home and we are complete again.  Once again a happy family looking forward to the future.

Diane Taylor
May 2009

Pneumococcal bacteria
Pneumococcal bacteria
A major cause of meningitis