Sahil now has a chance at an independent life that just a few years ago was hard to imagine. “He’ll be able to drive,” Rekha said, her voice beaming. “Sahil loves cars and before, this used to make me sad because if the seizures were not controlled, he couldn’t get his licence. This has been life changing.”
He has high functioning autism and was diagnosed with epilepsy early on in his life. Sahil would often have two to three seizures every week. “We had tried all the medication” said Rekha, “It takes time to try medication and sometimes it would work for three or four months and then the seizures would begin again.”
Then, doctors discovered that there was a dysplasia, an abnormal development of cells, on Sahil’s right temporal lobe. Rekha was told that some children grow out of this as their brains develop, but by the time Sahil turned five, his did not.
So the Raman family started trying new seizure medications that came on to the market and none of them worked.
“Things were difficult for Sahil and going to school was stressful for him. We started to see more seizures when he started school. So by September 2018, we decided to home school him.”
Rekha then came to the BC Children’s Hospital Neurological Care Centre and met with neurologist Dr. Cyrus Boelman.
“I didn’t understand what was happening with my child and Dr. Boelman took his time to answer my questions and make me feel comfortable. The nurse, Lynne, would always return my calls. She was very sympathetic, empathetic and would always try and help me. There was always a, ‘Don’t worry, we got you.’ ”
Lynne Beszant, the neurology nurse at BC Children’s noted, “It was a pleasure to work with Rekha, I remember our conversations well. Our role as nurses within the team gives the families direct access to someone who knows them, knows their history and has insight into the best steps for them to take in the immediate period after a seizure breakthrough.”
After years of trying different medications, Dr. Boelman suggested they consider surgery.
“Epilepsy is a disease with a heavy burden for patients and like for the Raman’s, it affects the whole family. Even over the course of my career so far, I’ve seen new neurological treatments emerge, including gene therapy, and cures that can improve the lives of patients like Sahil, such as advanced epilepsy surgery, now often involving robotically placed brain electrodes. It really takes a huge, specialized team made up of neurologists, nurses, neurosurgeons, neuropsychologists and neuroradiologists to change someone’s life.” said Dr. Boelman.
The Raman’s were introduced to other members of the Epilepsy Surgery program team, including Kelly Anderson, the nurse clinician who guides families through the experience. Kelly adds “I get to be the person that calls families to tell them that their child is a good candidate for surgery. It is an incredible thing to hear the hope that gives families like the Raman’s. Surgery can be a daunting prospect for the whole family and it’s a tremendous decision to make, but epilepsy is a terrible disease to live with, the fear of when a seizure may come is constant. What is so powerful about epilepsy surgery is that it offers a path forward.”
Leading up to the surgery, Rekha and Sahil had three, separate five-day stays in the Epilepsy Monitoring Unit to determine where the seizures were coming from. During their stays, volunteers would come in to play with Sahil as he had to stay in one room, attached to a video-EEG machine for testing.
“I can’t imagine being anywhere else and getting the care that we got. The love, the support, the nurses were so kind. This is not a job for just anyone,” said Rekha.
Sahil’s surgery was booked for February 2020 and then COVID-19 hit. During the first wave of the COVID-19 pandemic, non-emergency surgeries were postponed to ensure the health care system had adequate resources to support the COVID-19 response. The Raman family patiently waited for their new surgery date which was September 11, 2020. This is now a lucky day in their family.
“Dr. Tamber was our surgeon and the first time I met him I knew it was going to be successful. He has a gift,” said Rehka.
“I started my career as a pediatric epilepsy surgeon precisely because I wanted to be able to play a part in transforming a young child’s life,” said Dr. Mandeep Tamber, a neurosurgeon at BC Children’s Hospital. “It is humbling to receive a message of gratitude from a patient’s family – it reminds me that successes such as this cannot be achieved without the contributions of many other team members. We have a specialized team of nurses in the operating room, led by Winnie Tong, a clinical resource nurse who ensures we are able to provide state-of-the-art surgical care for our patients. I’m grateful to be able to work alongside many talented colleagues every day; together, we are working hard to help as many children with epilepsy as possible reach their fullest potential.”
The surgery was eight hours long and there were some risks. There was a chance that Sahil could lose some speech and verbal memory abilities and part of his peripheral vision. Since the surgery, Rekha says they have not seen any signs of impaired speech or vision.
“Nothing prepares you to see your child post-surgery. At first, I thought we were going to be in the hospital for a while, but three days after the surgery, we were home.”
Since Sahil’s surgery, he has not experienced any seizures. He is at home and enjoying Grade 4 home schooling, especially math and English classes. He is active and outdoorsy and is now walking, running and just being himself. He does behavioural therapy via Zoom and goes in-person for one-on-one guitar lessons through Pacific Autism. The family also has new puppy, a husky they named Rania, which is keeping the whole family busy during these unique times.
“I don’t have enough words, we’re so fortunate that BC Children’s Hospital did this for Sahil,” added Rekha.