“My daughter is dying”: Limerick mother’s story of daughter’s brain tumour diagnosis
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Two years ago, when Regiane Zaboto’s then six-year-old daughter Luiza began complaining of pain in her legs, got a fever, and was tired, the mother of three was not overly concerned.
“It was summer, when all kids seem a bit more tired, and lots of bugs were going on in the crèche, so it didn’t really alarm us until the other symptoms started,” says Limerick-based Regiane.
Both she and her husband, Leandro, are managers in the IT sector.
Luiza vomiting in the morning, before she had eaten, was the first alarming symptom. “She was vomiting on an empty stomach,” Regiane says.
“I thought maybe it was the vomiting bug I’d heard people talk about. The GP prescribed medication to help her empty her intestines. She didn’t improve. It would happen maybe two days a week.”
Regiane and Leandro began seeing other unusual symptoms.
“She was closing her left eye to watch TV. And, walking home from crèche, she was turning her head sideways to talk to me, so that she could see me with her right eye. Her balance was off, too; she was tripping, not seeing stuff on the floor.”
A “frightened” Regiane was considering having Luiza referred to an ophthalmologist.
But the GP sent her to the emergency department at University Hospital Limerick. Eye tests showed that her vision was 100%, but also indicated inflammation on the nerve of her eye.
“They sent her for MRI to check better what was going on in her head. At that point, I felt something more serious could be going on: I had a bad feeling.”
Luiza Bertunes Zaboto (age 8, sitting), with her mum Regiane and dad Leonardo, and sisters Helena (age 6) and baby Clara in July 2025.
Luiza was diagnosed with a medulloblastoma brain tumour. With Leandro at home looking after thier younger daughter,Helena,Regiane was in shock.
“When they said it was a tumour, I went blank. I couldn’t talk, cry or do anything. I sat there, quiet. They asked ‘Do you have any questions?’ I couldn’t formulate questions. They suggested calling my husband. And, in telling him, I cried, I couldn’t stop – everything came at me then.
“But, as a parent, I knew I had to make myself strong for Luiza. I wiped my face, but she knew something was wrong. She said ‘What’s happening?’ They were transferring us straightaway to Temple st, so I said she had to go for more tests in another hospital and Daddy was coming, and she took what I said and was calm.”
“such a diagnosis is terrifying. You have to keep bad thoughts away, but in my head the only thought was ‘My daughter is dying, Helena’s going to lose her sister’.”
At Temple St Luiza underwent further MRI to identify the tumour size and location. She needed surgery to remove the tumour and to drain fluid from her brain.
“at first, I was saying ‘If you can take it out, take it out’. But the day before surgery the doctor explained all the things that could go wrong. For example, when she came back from surgery she could be a different person, not herself anymore. After that, we panicked.”
But the doctors said that luiza was not as sick as she might have been with this kind of tumour.”Usually, the child has episodes of fainting, epilepsy, black-outs. Luiza didn’t.Hearing that helped.
Brain Tumour Ireland Launches ‘Heads Up’ Campaign for National Brain Tumour Awareness Week 2024
National brain Tumour Awareness Week, taking place from October 20th to 26th, 2024, will see brain Tumour Ireland running it’s ‘Heads Up’ campaign to raise awareness of brain tumour symptoms in children and teenagers. The campaign aims to equip the public with the knowledge to recognize potential signs and seek timely medical attention. This year’s focus includes a newly developed guide detailing symptoms that can arise in babies, children aged five to eleven, and teenagers up to eighteen.
Understanding the ‘Heads Up’ Campaign
Brain tumours can present differently depending on age, making early detection challenging. Brain Tumour ireland’s ‘Heads Up’ campaign directly addresses this by providing age-specific symptom guides. Recognizing these symptoms is crucial, as early diagnosis considerably improves treatment outcomes.
Symptoms in Children and teens
The ‘Heads Up’ guide breaks down potential symptoms by age group. While symptoms vary, some common indicators include:
* Persistent Headaches: Headaches that are frequent, severe, or don’t respond to typical pain relief.
* Vision Changes: Blurred vision, double vision, or loss of peripheral vision.
* Balance Problems: Difficulty with coordination or frequent falls.
* Unexplained Nausea or Vomiting: Especially if it occurs in the morning.
* Seizures: Any type of seizure activity.
* Changes in Behavior or Personality: noticeable shifts in mood, personality, or cognitive function.
* Weakness or Numbness: In arms or legs.
It’s vital to note that experiencing one or more of these symptoms doesn’t automatically mean a child has a brain tumour. However, if symptoms are persistent, worsening, or concerning, seeking medical advice is vital.
Webinar: Supporting Children with a Brain Tumour
brain Tumour Ireland is hosting a webinar dedicated to supporting children diagnosed with brain tumours and their families. The webinar will take place on Monday, October 20th, 2024, from 6:00 PM to 7:30 PM. This event will provide valuable data and resources for navigating the challenges associated with a childhood brain tumour diagnosis.
You can register for the webinar and download the ‘Heads Up’ guide on the Brain Tumour Ireland website: https://braintumourireland.com.
Key Takeaways
* National Brain tumour Awareness Week 2024: October 20th – 26th.
* ‘Heads Up’ Campaign: focuses on recognizing brain tumour symptoms in children and teens.
* Age-Specific Guides: Available for babies, children (5-11), and teens (up to 18).
* Webinar: October 20th, 6:00 PM – 7:30 PM, on supporting children with brain tumours.
* Resource: https://braintumourireland.com for registration, guides, and event details.
Looking Ahead
Brain Tumour Ireland’s ongoing efforts to raise awareness and provide support are crucial for improving outcomes for those affected by brain tumours.By increasing public knowledge of symptoms and offering resources for families, the ‘Heads Up’ campaign plays a vital role in ensuring timely diagnosis and access to care. Continued research and advocacy are essential to further advance treatment options and improve the quality of life for individuals living with brain tumours.