Helping sick Queensland kids through medical imaging
When Fiona was pregnant with her third son James, she remembered feeling some unusual ‘vibrations’ in her tummy, but just put it down to her growing baby boy being a bit of a wriggler. It wasn’t until he was almost one that she learned those movements had been seizures.
“James’ showed no obvious signs of epilepsy until he had his first major seizure at home when he was nine months old,” Fiona recalled.
Fiona, who lives with her husband Malcolm and James’ three siblings in Mission Beach, immediately called the Queensland Ambulance Service who advised her to take James straight to the Emergency department at Cairns Base Hospital.
“At first, we hoped the seizure may have been a ‘one-off’, but after James suffered another seizure 10 days later, an MRI and EEG pointed to epilepsy.
“It was at this time, we realised he had been having ‘absence’ seizures (very short seizures sometimes mistaken for daydreaming), but we just hadn’t realised what they were,” Fiona said.
After the diagnosis, James’ seizures escalated rapidly and doctors put him on medication to control his episodes.
The medication appeared to work and James was seizure-free for a month before they returned more uncontrolled and intense than before. He now had focal (or partial) seizures with rapid arm and leg movement.
“At his absolute worst, when he was 22-months-old, James was having up to 12 seizures in the day and up to 12 in the night. His whole development went backwards, he couldn’t walk without falling over and his health really declined.
“It was awful. There was no obvious cause at that point. The MRIs couldn’t pick up the cause, so it couldn’t be treated accurately,” Fiona said.
Malcolm took James, now two, to the Lady Cilento Children’s Hospital (LCCH) in Brisbane seeking more information, as Fiona was at home pregnant with their fourth child.
Doctors were able to improve James’ condition through a combination of different medications but it wasn’t until a follow-up appointment 18 months later that they were able to diagnose the cause of his epilepsy, thanks to new medical imaging technology funded by the Children’s Hospital Foundation.
James had a 24-hour EEG and MRI using a new head and neck coil, which coupled with a high intensity scanner, provides detailed images of the brain and neck.
It allows medical imaging specialists to detect the slightest abnormalities in the brain and provides neurosurgeons with more detailed images to guide procedures.
In James’s case, it detected a subtle cortical dysplasia in his brain.
Cortical dysplasia is a congenital abnormality of brain development where the neurons in an area of the brain fail to migrate in the proper formation in utero.
“Doctors told me his brain just would have formed that way. As I was pregnant with Eliza and felt her moving, I remembered how James used to move, like he was shaking, and I know now that he was having seizures in utero.
In January this year, James underwent surgery to remove the cortical dysplasia in his brain.
“Initially, when our doctor first mentioned surgery, I just cried. I feared the implications – if you take a piece out of the brain you can’t put it back. What if James ends up worse that he is?
“As we read more, became more educated about the procedure and what it could mean for him, we just wanted it to happen and wanted the best outcome for James.
James recovered well following surgery and to his parent’s joy, is now seizure-free. He is enjoying being a normal three-year-old boy having fun with his siblings, jumping on the trampoline and riding his bike.
“It’s an amazing outcome. We are so grateful that they could use the coil MRI machine to pick up that area in his brain and it could be treated. We feel lucky and blessed and are so thankful to the donors too, and all those who fundraise. The outcome for James would be so different without it.
“James’ development is delayed from the intense seizures he experienced over a long period of time, so he will be receiving rehabilitation treatment at the LCCH next year. We are excited to see what the next months and years will bring for James and his development,” Fiona said.
James is one of 250,000 Australians living with Epilepsy. With one in 25 people suffering from epilepsy at some stage in their life, it’s vital to continue to invest in the state-of-the-art equipment and latest research to improve the outcome and quality of life for these children.
To help the Children’s Hospital Foundation to continue to fund life-saving medical equipment at the Lady Cilento Children’s Hospital, please donate here.