New Kinsmen Chair in Pediatric Neurosciences improving quality of life for babies with potentially fatal brain condition

As the newest recipient of the Kinsmen Chair in Pediatric Neurosciences at the Alberta Children’s Hospital Research Institute, Dr. Jay Riva-Cambrin is researching whether a less-invasive treatment for children with hydrocephalus could lead to fewer side-effects and a higher quality of life long-term.

The Professor of Neurosurgery at the University of Calgary’s Cumming School of Medicine (CSM) is one of only a handful of neurosurgeons in Canada who does the procedure for infants who have an abnormal buildup of cerebrospinal fluid in the brain. 

“The biggest advantage of this procedure is it usually only has to be done once and may lead to less infections. It could have a huge impact on the patient’s overall quality of life,” says Dr. Riva-Cambrin, who is also the director of CSM’s Neurosurgery Residency Training Program and a member of the Hydrocephalus Clinical Research Network (HCRN).

Known as endoscopic third ventriculostomy (ETV) and choroid plexus cauterization (CPC), the procedure involves making a tiny incision into a baby’s head, inserting a small camera and opening the brain’s third ventricle so fluid can escape. 

Unlike the current treatment with shunts (inserting tubes in the brain to drain fluid), ETV+CPC is much less invasive and more cost-effective, which also makes it a viable option for resource-poor nations.

Dr. Riva-Cambrin, who was named to the Kinsmen Chair in November 2023, has been working on an existing trial through the HCRN and the U.S. National Institutes of Health (NIH) that compares ETV+CPC versus shunts for infant hydrocephalus.

Thanks to funding from the Kinsmen Chair, not only is he able to study the effectiveness of the procedure from a science-based standpoint (MRI results, blood protein levels, etc.) but also how it is affecting the child on a holistic level.

“Is the child’s quality of life better? Are they more functional? How happy are these kids? That’s actually the thing parents care about,” says Dr. Riva-Cambrin.

He explains that while testing at one and six months, is important it takes until a child is six years old to get a full measure of their IQ and the impact each treatment option had. The Kinsmen funding allows him to complete the study and secure long-term funding for his dedicated research coordinator Ruksana Rashid.

“The Chair guarantees I can employ my team. I can have that position of somebody helping me follow these patients and we can continue the study for the full six years instead of truncating it at three years,” he says.

He says hydrocephalus occurs in about one in 1000 infants in Canada but the numbers are rising. This is because more preterm babies are surviving, thanks to technology and care in the neonatal intensive care unit (NICU).

Dr. Riva-Cambrin says he treats anywhere from 20 to 50 babies – most who are diagnosed shortly after birth – each year.

“You can get hydrocephalus from prematurity, infection, spina bifida or from tumours,” he says. 

Kinsmen Chair investment has ‘moved the needle’ for treating hydrocephalus 

The Kinsmen Chair was established by the Kinsmen Club of the Stampede City and the Kinsmen Care Foundation 20 years ago and is supported by an endowment created with the Alberta Children’s Hospital Foundation (ACHF).

“We are so grateful to partners like the Kinsmen Club of the Stampede City and the Kinsmen Care Foundation for having the vision to make investments that pay dividends in the form of new treatments and cures for our community’s children,” says Saifa Koonar, President & CEO of ACHF.

“We are thrilled that the world-leading research underway by Dr. Jay Riva-Cambrin will be furthered by this support.”

As well as funding long-term research and shorter-term pilot studies, Dr. Riva-Cambrin also hopes to bring in a global visiting professor that will allow for sharing of information across borders.

It will all make a huge difference in the lives of children in Calgary and beyond, he says.

“The Kinsmen investment in me, my lab staff and my lab itself has already moved the needle to improve the treatment, outcomes and quality of life of children with hydrocephalus.”