'It means more freedom for Mikey': Our experience with cutting-edge surgery to treat epilepsy

“He loves swimming: We go to the Forty Foot. One day, he came out really quickly and grabbed my hand. He was so stressed, shouting, ‘Mommy, I don’t know what’s wrong with me, where are you?’ He couldn’t see me. I went to him and grabbed him.”

Mikey got his first febrile convulsion when he was four and was brought straight to ICU. “They put him in an induced coma to stop his brain seizing,” says the Stepaside-based mum. Her son’s epilepsy has been drug-resistant until recently. “Over the years, we tried all the medications: They never stopped it.”

She describes Mikey’s seizures as “not typical”: They cause oxygen to drop, so he always needs urgent hospitalisation.

But, today, Mikey is practically seizure-free, thanks to a procedure that has only recently begun to be used in Ireland for paediatric cases, and which pinpoints where exactly in Mikey’s brain his seizures were, allowing neurosurgeons to remove an area of brain tissue.

Two-year wait

Neurosurgeon at Children’s Health Ireland Dr Donncha O’Brien explains that Stereo EEG (SEEG) is a French-derived technique that involves a series of small electrodes being inserted into the brain with a robot system. “France has a big history of doing SEEG, whereas, traditionally, in the US a grid was placed over the brain.

“SEEG allows us to sample deeper areas of the brain, whereas the grid allows for sampling surface areas. The grid can be very beneficial. In Beaumont and Temple St Hospitals, we’ve done a few grid procedures over the years and they’ve been very successful: One patient is now pursuing an acting career.”

SEEG use is becoming more widespread, O’Brien adds. “For sampling a wider area of the brain, Stereo EEG is better. In Mikey’s case, we got a great result.”

Maria recalls first hearing about the possibility of surgery — but that not every child is eligible — from Mikey’s nurse in Crumlin Hospital. Neurologist Professor David Webb presented Mikey’s case to O’Brien, Dr Kieron Sweeney, and their team, who perform epilepsy surgeries between Beaumont and Temple St Hospitals.

“We didn’t know if Mikey would meet the criteria,” says Maria. “We were told we’d hear back. We were waiting two years and, meanwhile, Mikey had a really bad seizure, where he nearly died. It brought him up the list. We met the team and they explained that they’d perform an invasive EEG [SEEG]: They’d drill the brain, connect the electrodes, and Mikey would be monitored in hospital to see where the seizures were coming from.”

For Maria, husband David, and daughter Orlagh, 14, it was all highly stressful, even at the level of explaining it to Mikey, who has a mild learning disability and sensory processing disorder. 

We said, ‘We’re going to see if we can stop the seizures’. He knew the seizures were bad and he wanted out of them, so he agreed.

Mikey underwent the SEEG procedure in September 2024: 10 or 11 depth electrodes were inserted in the right side of his brain, towards the back. “We knew the seizures were coming from that area, but not the precise location,” says O’Brien.

Days later, with the electrodes all still in place, one showed the exact location of the seizures. Doctors deemed Mikey a good candidate for surgery. Maria says: “It was a big decision. He could die in the operation, but the doctor said, ‘If we don’t do this, he could die’. We had no choice. It was heartbreaking. We spoke to Orlagh and we took her to see him the night before surgery, because we didn’t know what would happen.

“The doctor said the part of the brain they were removing could affect his eyesight and speech. We had made the choice for him to be happy and healthy. I just prayed.”

When Mikey first came out of the six-and-a-half-hour surgery, he was in pain and staring in to space. “I was constantly saying, ‘Can you see me?’” recalls Maria. “The next day, he was very poorly, but the following day, he was walking, smiling, and he wanted to eat. His favourite thing is Lego and he was asking for that.

“The next day, he asked to go to the playroom. They have a Nintendo Wii and he was playing that two days after the surgery. The doctors couldn’t believe it. Mikey was just happy — and no seizures.”

Daunting experience for families

The SEEG procedure, which gave the neurosurgeons the information they needed — before any surgery could be considered — has been used in numerous adult epilepsy cases here over the past five years.

“We’ve done 40 to 50 cases; we do one adult case almost every month,” says O’Brien.

Mikey’s is just the second paediatric case to involve SEEG. The first was a girl, who is “doing great”, too. O’Brien acknowledges it is a daunting procedure for families. “But the results can be spectacular and unless we go ahead and do it — find the seizure focus — we won’t be able to do anything about the child’s condition.

“The complication rate associated with it is extremely low. It involves using this highly sophisticated robot, which means placement of the electrodes is extremely precise. It avoids any damage to arteries in the brain; we’ve had no major infection or haemorrhage.”

On the other hand, says O’Brien: “The risks with uncorrected epilepsy are very high.”

Previously, paediatric cases requiring SEEG were sent to Great Ormond Children’s Hospital, London. “We’re delighted we’re now doing it in Dublin. It represents huge savings to the State and it’s much more convenient for families.”

According to Epilepsy Ireland (www.epilepsy.ie), more than 45,000 people here have epilepsy. An estimated 10,000 children have the condition. The support organisation says up to 70% of sufferers can become seizure-free when the right treatment for their individual epilepsy is identified; most commonly through anti-seizure medications.

About 30-40% of people with epilepsy have a drug-resistant type. “Of those, 75% have generalised epilepsy: Seizures can come from any location in the brain. Where there are multiple areas of onset [in the brain], we wouldn’t be able to offer the patient surgery, so they wouldn’t be considered for SEEG,” says O’Brien, adding that the other 25% have focal epilepsy: Seizures come from one area of the brain and these patients may be candidates for surgery.

Spreading his wings

In Stepaside, Maria recalls how Orlagh, just before Mikey’s surgery, burst into tears. “She said, ‘This could be the end of Mikey’s suffering’. She’s an amazing child, very thoughtful. She takes the role of big sister and protects him. He goes to the Arch Club for special needs, she goes with him and would never take her eye off him in case he had a seizure. She and his rabbit, Peter, are Mikey’s best friends.”

Mikey’s surgery has been a complete success.

“He speaks more than ever before. He asks questions. Orlagh tells him, ‘You’re constantly yapping’. His speech therapist is amazed at his progress. We took him for an eye test: His eyesight is perfect. There are no side effects.

“Before he couldn’t manage with medication; now medication is working.” 

The impact on the whole family has been immense. “I can sleep now, I can actually sleep. Before, I was constantly up, looking at him, because he didn’t have seizures where he made noise. We can leave him in the living room and go to the kitchen to cook dinner. It means more freedom for him.

“We’re slowly letting him spread his wings; now I can think about sending him to the shop on his own. Before, I’d have been afraid he’d fall in the middle of the road with a seizure.

“Life is easier. Mikey is a warrior. And now he’s more relaxed, happy.”

• To support patients like Mikey, visit www.beaumontfundraising.ie/donate
• To support sick Children in CHI, visit www.childrenshealth.ie/donate/
• With International Epilepsy Day on February 10, Epilepsy Ireland will share how the condition becomes clearer when you know what to do. When someone has a seizure, remember the three key words: ‘Time, Safe, Stay’. Find out more at exa.mn/Time-Safe-Stay