A single mother from Swansea who thought her worsening headaches were caused by stress and exhaustion was actually fighting a life-threatening case of meningitis that left her permanently deaf and blind on her right side.
Rebecca Lewis, then 33, collapsed in her flat late one night in December 2016 while working two jobs and raising her seven-year-old daughter Sian. She had been losing weight and suffering from increasingly bad headaches, which she initially put down to her demanding routine.
“I can only describe the thunderclap headache. It sort of came up my spine and hit me in the head. I think I must have passed out because I woke up on the other side of my flat and I didn’t know how that had happened,” Rebecca said.
Rapid deterioration and hospital admission
Her condition worsened when she attended a work Christmas party at the Celtic Manor in Newport. That night, her headaches became unbearable and the right side of her head and her right eye became severely swollen. The following morning, she called her parents to collect her, with Sian, then seven, in their care.
Despite knowing something was seriously wrong, Rebecca insisted on taking Sian to see Father Christmas before going to hospital. “I knew I was really ill, you just know instinctually when something is really wrong. I remember thinking 'This is really bad. I don't know what it is, but I know it was really bad',” she said.
By the time her family made the journey to Morriston Hospital, Rebecca could no longer walk in a straight line and had lost her balance. At A&E, she was told she would have to wait at least four hours, but after her parents pushed for staff to acknowledge how swollen and distressed she was, she was rushed into the resuscitation area and put on intravenous medication.
Missed diagnosis and a sparkly fluid clue
Despite what Rebecca described as her “textbook symptoms”, meningitis was not immediately suspected. Doctors initially attributed her condition to stress or cluster headaches. She became extremely sensitive to light and had to be placed in a dark room.
“I kept saying, ‘no, it is not that, I have no balance. Something is wrong with my brain. It feels like something is eating my brain,’” she said. She repeatedly collapsed while attempting basic tasks like walking to the sink, overwhelmed by blinding light sensitivity, intractable pain, and violent vomiting.
Several days passed before she underwent a lumbar puncture. Rebecca described the procedure as traumatic, saying she temporarily lost her sight when the needle was inserted and realised she was struggling to hear the consultant. “I didn’t realise I was going deaf because meningitis was eating the nerves in my ear,” she said.
When cerebrospinal fluid was collected, staff noticed it appeared to sparkle. “I said, ‘Oh, it’s really sparkly. It’s like unicorn fluid. The nurse replied, ‘Yeah, it’s really not supposed to be sparkly. It means your brain is full of infection,’” she recalled. A neurosurgeon later told Rebecca’s brother that she was “gravely ill”.
Sepsis, recovery and a charity walk
Rebecca’s lymphocyte level was around 300, when it was supposed to be below 10. She had Lymphocytic Septic Meningitis. She was moved to neurological care, treated with antibiotics, and spent six weeks in hospital, missing Christmas with her daughter.
“I truly believe I survived those weeks purely because I refused to leave my daughter without a mother. I was living for her,” she said. She was discharged despite still feeling seriously unwell, but returned to hospital a few days later after collapsing at home, where sepsis was discovered. It was only after returning home that she developed the rash commonly associated with meningitis.
Her illness left her permanently deaf and blind on the right side, but Rebecca said she is one of the lucky ones. Meeting the mother of an 18-year-old girl from Cardiff who died from meningitis last year prompted her to share her own experience. She believes medical staff need to be more aware of the warning signs of meningitis, because doing so could save lives.
“A decade has gone past since mine and they’re still not doing the first-line checks on people and people are dying, or losing limbs. Meningitis is a medical emergency; it must be treated with the gravity it deserves,” she said.
Rebecca says the warning signs for meningitis are bad headaches, nausea, a red or purple rash that stays even when you roll a glass over it, fever and being pained by bright lights. On Sunday, she will walk 21 miles with her daughter Sian to raise money for Meningitis Now, a charity working towards a future where no-one in the UK loses their life to meningitis.
Today, Rebecca says she is “building a full and vibrant life in Wales, with her amazing family and friends” alongside her partner Emma, her daughter Sian, her stepson Isaac, and their household of five pets.
