During Christmas 2011, my seven-year-old daughter Trinity suffered a head injury while on holiday in the U.S. She hit her forehead, crushing her skull, which caused a bone to pierce through the membrane into her brain tissue.
After extensive surgeries she made a rapid recovery, returned to school and everything seemed to go back to normal.
About six weeks after the accident, Trinity woke up screaming in the middle of the night with a severe headache. A few hours later she started vomiting and had a fever. I assumed it was the flu and let her sleep it off for the rest of the day. By the following morning, she became increasingly unresponsive; I had to say her name three or four times before she would look at me. And when she finally responded, she had a glassy-eyed look. I took her to an urgent care facility; and as soon as the staff saw Trinity’s condition, they called an ambulance and we were rushed to SickKids Hospital. By the time we arrived there she was verbally unresponsive and could not open her eyes, though she was still gesturing repetitively with one hand.
A team of doctors worked together to diagnose Trinity. They thought meningitis was unlikely given her state, but they gave her antibiotics as a precaution. After 24 hours, they determined it was something bacterial, but more time was needed for definitive results to determine the course of treatment.
Electrodes were attached to her head to monitor brain activity and on our second morning at the hospital, I watched the lines on the monitor go into a frenzy and then suddenly flat line. Just over three days after waking up with a headache, Trinity was gone. She became brain dead due to swelling that was later confirmed to have been caused by meningitis.
Meningitis. This condition, a common form of meningococcal disease, had been mentioned to me several times by various doctors since her head injury in 2011, but I knew little about it. In Ontario, vaccination against one of the most common strains of bacteria that can cause meningitis is provided at an early age as part of the provincial publicly funded immunization schedule. When the possibility of meningitis was mentioned after her accident, I checked Trinity’s vaccination card, which confirmed she had received a vaccination around her first birthday, so we assumed Trinity was protected. Little did we know that there are multiple strains of bacteria that can cause the disease and that some, like the type that Trinity contracted, aren’t vaccine-preventable.
Meningitis is the inflammation of the lining around the brain and spinal cord. There are many strains of meningococcal bacteria which can lead to meningitis, some of which can be fatal or cause severe mental and physical consequences. It is easily spread through close physical contact, just like a cold or flu. The timing of symptoms can vary and not all symptoms are always present. Some signs are headache, fever, vomiting, drowsiness, stiff neck, rash and decreased responsiveness. It can be treated with antibiotics but it’s important that treatment is started right away as the disease can spread quickly. Even with appropriate treatment, the disease can still be fatal in about 10 per cent of cases.
The vague flu-like symptoms make it difficult to diagnose, even by medical professionals. It is only in hindsight that we understand that the severe headache Trinity experienced is one of the first symptoms of meningitis. That her lethargy was too excessive to be just the flu. That I even noted she had the telltale sign of a stiff neck, because I later remembered that I couldn’t get her to turn her head to the side when she was throwing up. That the decreased responsiveness was already a ‘phase three’ symptom, the most advanced.
Now, I am more educated about the disease, and I realize my family is not out of the woods yet. The various strains can strike at different ages, with infants and adolescents being at the highest risk. Our other daughter, Saskia, is a healthy 15-year-old, heading off to university in a few years, where adolescents are more at risk of being exposed to the bacteria. Thankfully, there are vaccines which help protect against additional strains—which she will be getting. She is also now much more aware of what symptoms to look for on the outside chance she contracts the disease, or one of her friends at university does.
Trinity’s case is not common. A healthy seven year old rarely contracts the type of meningitis she did. The head wound compromised her body’s ability to defend itself against that particular bacteria, which is actually commonly found in many people’s systems on an everyday basis. After Trinity’s confirmed diagnosis, we immediately checked with doctors about notifying Trinity’s school and warning other parents about treatment, but this was not a contagious strain. No other children she came in contact with were under threat.
We miss Trinity every day. Four years have gone by and it still feels surreal. Every year on Trinity’s birthday we go to the cemetery, write messages on balloons and watch them go up to her. We also participate in annual EdgeWalk events at the CN Tower in Toronto, Ontario to help raise awareness about the disease.
Trinity’s father and I both knew so little about meningitis before Trinity contracted it. We really never heard anything about it until this happened to us. Now we have people come up to us and comment on our story, telling us that they know someone who contracted the disease and either died or had long-term complications. Recounting the details of losing Trinity never gets easier, but we continue to share our story in hopes that other families will educate themselves on this disease and prevent another tragedy. If we can spare even one other family, our little Trinity will become a guardian angel, protecting people in death as she cared so sweetly for people during life. We must start with education on prevention and then move onto recognizing the symptoms for early diagnosis. Every hour counts. Educate yourself. And then please spread the word. Awareness and vaccination can help prevent this deadly disease.