Hamza Ibrahim recently told his mother that he was devastated he will never be able to see her loving face again because of a brain tumour that has left him with permanent vision loss.
The eight-year-old Adelaide boy is having to adjust to a new life, currently unable to do the things he loves, like watching Harry Potter or playing basketball with his friends because of the 5cm benign tumour that caused fluid build-up and pressure, damaging nerves affecting his eyesight.
“Yesterday he said to me, he thought there was no point in living if he couldn’t see,” his mother, Jessica Ibrahim said.
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“He says things like ‘I feel sad I’ll never see your face again’.
“But generally, he’s a really happy boy … I keep trying to focus on the positives. Yes, this is a hard time, but we will get through it as a family”
Hamza Ibrahim’s benign tumour was removed at the end of August 2023. Credit: Supplied
In the lead-up to Hamza’s devastating diagnosis, Jessica said there were a number of symptoms the youngster was experiencing that were becoming increasingly severe. However, GPs failed to see them as signs of something serious.
She said two months before being diagnosed with a slowing-growing pilocytic astrocytoma brain tumour, Hamza began experiencing random headaches.
“There was no frequency to it, no consistency,” Jessica said.
“I would be like (to him), ‘maybe you need to drink water, you’re dehydrated, maybe you need to get off your iPad’, just normal troubleshooting things as a parent that you do.”
Then in July, Hamza started experiencing some vomiting. By August, the tumour had affected his vision, and his symptoms became more acute.
“He couldn’t walk straight …(but) when children lose their vision and it’s so gradual, they don’t actually know,” Jessica said.
“He was clumsy, he was banging into things, and it just progressively got worse.”
Hamza Ibrahim has five other siblings, who he loves. Credit: Supplied
Despite Jessica’s gut feeling that there was something alarming causing Hamza’s symptoms, two GPs dismissed the mother’s call to do more diagnostics than just a blood test.
“In the back of my head I was thinking why don’t we do a CT scan, but you trust the doctor’s opinion,” she said.
“It wasn’t until the school called me and said, ‘your son is not safe at school, you need to come and get him’ (that) I took to him a third GP who suggested I take him to a hospital and within six hours we had a diagnosis.
“I thought this was a nightmare, and I was in total disbelief.”
At the end of August, the tumour was removed from the cerebellum part of Hamza’s brain.
But there is still built-up fluid that is being drained to other parts of his body through a permanently installed device known as a shunt.
“He is still having excruciating headaches. They still haven’t worked out the exact right settings for his shunt,” Jessica said.
Doctor education necessary
Jessica said Hamza’s experience made her passionate about advocating for doctors to trust parents’ gut instinct and do further training on identifying tumours.
Hamza’s neurosurgeon told Jessica that it wasn’t uncommon for brain tumours to go undetected, with another young patient going to the GP nine times before being properly diagnosed.
“I don’t want this to happen to another child. It’s devastating,” Jessica said.
The tumour was found in the cerebellum part of Hamza’s brain. Credit: Supplied
Paediatric neuro-oncologist at the Women’s and Children’s Hospital, Professor Jordan Hansford, agreed it was necessary to educate new doctors and current GPs on brain tumour symptoms because there were some cases in children going unrecognised.
“It’s not uncommon that it could take some time in children to diagnose brain tumours … it can be a story of quite a long time of symptoms and signs that are not specific or anything,” Hansford said.
“One of the red flags I often teach young doctors about is multiple presentations for symptoms and the concerned parent who’s presented multiple times, we need to be thinking about, is there something more than just a cold, virus or flu.”
Hansford, also a researcher with the University of Adelaide’s South Australian immunoGENomics Cancer Institute (SAiGENCI), said there were about 200 cases of brain tumours in children diagnosed on average every year.
Some of the common symptoms include growth and size of the child’s head in comparison to their body, headaches, nausea — particularly in the morning — and changes in vision, he said.
Jessica Ibrahim said she’s been telling her son, Hamza, that he will find new ways to enjoy his favourite activities now he can’t see. Credit: Supplied
The Adelaide mother is in the process of applying for government support payments since she is now Hamza’s full-time carer, while managing five other children, the youngest of whom is 18 months old.
Jessica’s family have set up a GoFundMe to help raise money for her, as she has no other financial support with her husband currently overseas, waiting for his visa to be approved.
The next couple of months will be difficult for her son, as he adjusts to a life with no eyesight, meaning he will have to say goodbye to his school friends and attend a school for students with vision impairment.
Jessica said while she and Hamza were both grieving the loss of his eyesight, they were looking forward to creating new experiences and memories.
“He’s just been so strong, and I always tell him how strong he is and how brave he is,” she said.
Donations to the GoFundMe can be made here.
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