Girl, 11, misdiagnosed over 30 times before real cause of crippling headaches was uncovered

An 11-year-old girl was misdiagnosed with sickness bugs and migraines by medics 30 times before she was finally diagnosed with a brain tumour.

Tia Gordon, from Northampton, was taken to hospital as an emergency despite having seen GPs, A&E doctors and making calls to NHS 111 about her symptoms. Her mother, Imogen Darby, a pharmacy dispenser, said Tia also had her glasses prescription changed four times before the tumour was spotted. She had sought help for Tia's migraines and vomiting over a three-year period before she was told the wait for an MRI scan would be eight months. 

It was only when the condition affected Tia's balance and ability to walk that she was given an emergency scan. It showed she had a 3.5cm brain tumour. Darby said: "I was told Tia had stomach bugs and migraines. The first thing I was told, because it was the summer, (was that) she just needed to drink more water. After probably a year, she got diagnosed with migraines and they gave her paracetamol for that.

"She was also given another medication for that and her final diagnosis in January (this year) from paediatrics was migraine with sickness. Over more than three years, I took Tia to doctors, she was refused MRIs, she was refused to be seen by emergency paediatrics, I called 111, I went to A&E, she had her glasses changed four times, she was given medication and she had a consultant, but it took for her to be unable to walk for her to get the care she needed."

Darby first noticed Tia's symptoms during the first COVID lockdown in March 2020, when the young girl started being sick. She started being sick every few months, then monthly until it became more frequent. It felt like I was calling them (medics) and going there constantly," Darby said. "I tried to get her referred to emergency paediatrics twice and that was declined both times - I was told it wasn't an emergency.

"She finally got referred to paediatrics and months later we had an appointment. That's where we were at - it was desperate stakes."
In the few months before the diagnosis. Darby said she took Tia to a GP about 10 times and called NHS 111 about three times. "I took her to A&E and I was told she had a stomach bug and told kind of just leave her to it," she added.

However, Tia then developed new symptoms. "Tia was holding her neck funny," Darby explained. "She had gone on a caving trip with school. I said, 'oh, have you slept on your neck funny, what's wrong?' and she said, 'oh, we went caving and I think it's because I had my head down for such a long time, my neck's a bit stiff'.

"So we treated it, put some heat on it, you know, the normal things. And then it was going on for a long time and I thought, 'if you have a stiff neck, it's not going on for weeks', so I took her to the doctors about that and they said, 'she's got a stiff neck from sleeping on it, she just needs to move her neck around'."

By that point, Darby had managed to get a paediatrics appointment and explained about Tia's neck. She was referred for physio for that," Darby said. "They said that because she slept on it funny and she'd been holding it there for such a long time, that it had just stiffened and she needed physio to kind of get it moving." Deep down, though, Darby felt something was wrong with the way Tia was holding her neck. It was also noticed by wider family. "The consultant said she would do an MRI for peace of mind but the waiting list would be months long," she said.

From then on, Tia was being sick most mornings and vomited every day between November 2023 to January 2024. "It got really bad," Darby said. "She was - every single morning - throwing up and it wasn't just throwing up, it was projectile vomiting." In the few days before Tia was admitted to hospital, the little girl also seemed wobbly. "She was tipping her milk out in the kitchen sink," Darby said. "She was standing there and she was tipping it and it was just all tipping down the front of the sink and she didn't notice she was doing it at all.

"I had to say, 'Tia, you're spilling milk all over the floor, what are you doing? And she was like, 'oh, okay' but hadn't noticed." The following day, Tia's school phoned to say she was holding her neck strangely and was a bit off balance. I was at work at this point and I was just standing there and I just, I don't know what it was. I just thought, 'no, there's something wrong with her'. I called the paediatric consultant and just said, 'something's not right with Tia'."

Darby was told to bring Tia to Northampton General in the evening. While there, Tia was unable to walk in a straight line. A CT scan revealed Tia's tumour, which is a pilocytic astrocytoma - the most common type of childhood brain tumour. An ambulance was called to take her to Queen's Medical Centre in Nottingham. Tia was operated on over a 10-hour period and the benign tumour was removed.

"It was quite a horrendous day," Darby said. "From the surgery, they managed to get 96 per cent of it out." Since surgery to remove the growth - which Tia calls her "astronaut tumour " due to it being an astrocytoma - the youngster gets very tired and can still be unbalanced.

She will have an MRI scan every three months for the next five years and is undergoing physiotherapy, as well as having regular meetings with neurologists. Meanwhile, Tia is keen to get back to her activities. "We all call her Dr Doolittle, she absolutely loves anything to do with animals," Darby said. "She likes dodgeball and she loves reading, absolutely loves reading. She really loves spending time with our family. We're all really close knit family, there's quite a lot of us, so mainly what she does in her free time is spend time with her cousins or my sister and my brother."

Cameron Miller, director of external affairs and strategy at the Brain Tumour Charity, said: "We wish Tia all the best with her continuing treatment and thank Imogen for sharing her story. Sadly, it's one that we often hear. For many brain tumour patients, it simply takes too long to be diagnosed - and this is one of the reasons why we're calling for a National Brain Tumour Strategy."

According to the Cancer Research UK, around 175 children are diagnosed with astrocytoma each year in the UK. Boys and girls are equally affected by the tumour. While many symptoms are general and non specific, similar to less serious childhood illnesses, they can include:

• Headaches in the morning
• Feeling or being sick – being sick often makes the headaches feel better
• Double vision
• Seizures (fits)