Night-time headache red flag could have saved our Gemma
Family raise awareness of key warning sign for daughter’s fatal rare brain condition
The devastated mum of a schoolgirl who died from a hidden brain condition has warned of a “red flag” symptom that should be known by all parents.
Gemma Caffrey, 12, passed away on October 25, 2021, after suffering intense headaches while on a family trip with her parents to Haggerston Castle in Northumberland. In the days prior to her death, the Hamilton schoolgirl had been waking in the night. She was admitted to the Great North Children’s Hospital in Newcastle but died after two weeks in the unit. An inquest found she died of cerebral venous sinus thrombosis, a condition that stops blood draining out of the brain. Her parents, Alison, 50, and Graeme, 52, now hope to educate other parents about the warning signs to prevent other families experiencing the same tragedy.
Alison told the Record: “Gemma had been waking up from her sleep with a headache.
“Me and my husband Graeme did not know anything about this being a red flag, and if we did, we would have taken Gemma straight to the hospital. We now know this is a clear symptom of CVST.
“We never want to see this happen to another child again. All parents should be made aware of this symptom. If you wake with a headache, this is a serious brain concern and needs immediate intervention.
“This is an extremely rare condition for a 12-year-old but I’d tell parents never to take your intuition for granted.”
Gemma began waking up with headaches in the morning of September 30, 2021, but her parents weren’t too worried as they wouldn’t last all day.
At first, Alison and Graeme thought it could be down to hormones, a new glasses prescription, or migraines which she had previously suffered from when she was younger.
Just a couple of days before their trip to Northumberland, Alison spoke to a GP but believing there was nothing to worry about, made a face-toface appointment with a doctor for 10 days later.
“I didn’t think for a minute that it was anything like a brain condition,” Alison added.
“There were no other symptoms; no fever, Gemma hadn’t stopped eating or drinking, it was just these headaches first thing when she woke up, just above her eyes.”
“Whenever I talk to other parents, they tell me they would have done exactly the same thing and that I wasn’t to know, but to lose your only child is just devastating.
“There are just no words to describe the grief.
“The only way we’ve got through it is from the support of family and friends and putting our attention into our business.
“The first day I got back from Newcastle, I just put on my makeup and went to work.
“Otherwise I just would have collapsed and done nothing – but I needed to be strong.
“Birthdays and Christmas are incredibly hard, along with any milestone. Every day is just incredibly difficult, so I’d say to other parents now, if you are in doubt about anything, please see your doctor.”
i’d tell parents never take intuition for granted alison caffrey on gemma’s condition