Where do you turn when the medicine won’t work? Surgically removing part of a child’s brain may sound scary, but for six-year-old Emma, it gave her a whole new life.
“She’s always been happy but now I feel like she’s living her best life,” says Emma’s mom, Sarah.
In 2015, when Emma was six months old, her parents, Sarah and Sean, could tell something was not quite right. She started making strange faces as if she were in pain, so they took her to HSC Winnipeg Children’s Emergency. It was there that Dr. Samantha Marin discovered Emma was having seizures and diagnosed her with infantile spasms, also known as West syndrome, a rare form of epilepsy.
“It’s been a struggle. She was our first baby and you want the best for your children. You don’t expect it, it was like being blindsided,” says Sarah.
Emma was given at least five different medications, and her family tried other measures like the ketogenic diet and cannabis oil, but nothing would stop her seizures. So, in 2017 they moved on to see if surgery could be the answer.
Dr. Marin ordered testing to learn even more about Emma’s seizures and Emma became the first child admitted to the Pediatric Epilepsy Monitoring Unit (EMU) at HSC Children’s. Kids like Emma spend around two to five days in the EMU so their brain waves can be recorded using Electroencephalography (EEG). The idea is that if doctors can find where the seizures are coming from, surgeons can remove or disconnect those parts of the brain.
“The EMU is extremely important. The EMU is like my eyes. I need my eyes to look into the details of epilepsy and seizures,” says neurologist, Dr. Helen Xu, who has also helped treat Emma throughout her journey at HSC Children’s.
The EMU helped confirm Emma would benefit from a disconnective hemispherectomy, where a portion of the brain where seizures are starting is removed.
“It’s scary to hear that they’ll remove a section of brain, or even just brain surgery itself is scary when someone’s saying it about your two-year-old.”
While it may have been scary, the surgery was a success and Emma went a whole year without seizures. Then a new kind of seizure popped up for Emma. After many more tests, in 2020 when she was four years old, she had an anatomical hemispherectomy where the entire half of the brain affected by the seizures is removed.
Now Emma has gone another year without seizures and her parents are thrilled.
“She’s doing amazing, it’s so nice not to see her having seizures. You can tell she’s learning and comprehending things a lot more. She’s just starting to walk independently which is amazing, I’m so happy,” says Sarah.
Emma does face side effects including visual loss in both eyes and a loss of mobility called hemiplegia in her left side, but she is a resilient girl learning to adapt.
“Eating, drinking, walking, being more independent, verbalizing – we have lots of goals for her but the main thing is that she’s so happy,” says Sarah.
The EMU that helped Emma was entirely funded by donors, Lilibeth and Michael Schlater. Sarah is very thankful supporters like the Schlaters continue to give, because it means kids like Emma get the care they need close to home.
“Thank you for your generosity. Without donors, kids in Manitoba don’t get the opportunity to have the special care that they need. We’re just thankful.”
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