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In the best hands

When Lisa Heinrichs first looked into her baby’s big brown eyes, she was certain he’d grow up to be heartbreaker. Little did she know it would be her own heart that would break with a diagnosis he received just months later. “Kylar had a fairly large head and we could see his veins. His cranium wasn’t closing and there was something happening with his eyes. All of these things alerted Peter and me that something could be wrong,” says Lisa.

Soon after, Lisa and Peter noticed that their son seemed unable to gaze upward with his eyes. A trip to an observant Optometrist led to referrals to other specialists, an ultrasound and a CT scan. Then they got Kylar’s diagnosis.

“We had never heard of Hydrocephalus. Of course, we left the appointment and googled it. That was the worst thing we could have done because we saw photos of the untreated condition and it was really frightening,” says Lisa. “However, when we arrived at the Alberta Children’s Hospital and met with our neurosurgeon, Dr. Jay Riva-Cambrin, he made it very clear that he could help Kylar and that he would be okay.”

Historic grant promises brighter future for babies

The Alberta Children’s Hospital and Alberta Children’s Hospital Research Institute (ACHRI) are co-leading a first-of-its-kind North American study to determine the best surgical treatment for babies with Hydrocephalus.

The multi-centre clinical trial is being fuelled by the largest grant ever awarded to Pediatric Neurosurgery in the world – $10M USD – from the National Institutes of Health (NIH), one of the world’s foremost medical research centres. The participating children’s hospitals in the study – including three Canadian sites – represent the top Hydrocephalus researchers and clinician-surgeon scientists in the world.

Each year, tens of thousands of babies in Canada and the United States are diagnosed with this condition.  Fluid that cushions the brain and spinal cord is unable to drain, causing a dangerous build-up in the skull. The babies’ heads swell and, left untreated, the pressure can lead to brain damage and a loss in mental and physical abilities. Thankfully, with early diagnosis and timely surgery, most children recover very well.

Dr. Jay Riva-Cambrin is a pediatric neurosurgeon at the Alberta Children’s Hospital and an ACHRI researcher. He is a principal investigator on the randomized trial designed to determine the cognitive impact of surgery on children with Hydrocephalus. He says there are currently two surgical methods used to treat Hydrocephalus. For the 50 new patients with this condition he helps each year, he relies on both of the techniques equally.

“With this study, we can finally end the debate as to which procedure is best and ensure we are doing everything in our power to not only save lives, but to help the children reach their highest potential.”

– DR. JAY RIVA-CAMBRIN, Alberta Children's Hospital neurosurgeon

The first and most common treatment for Hydrocephalus is the placement of a shunt. A shunt is a soft flexible tube that is placed inside the brain to divert excess fluid from the brain to the belly where it can be absorbed. Placement of a shunt within the brain is considered straight forward and the operation typically takes less than an hour.

While incredibly effective, shunts can require follow up care. Forty percent of shunts block within the first two years, meaning the surgeon must go in, cut out the plugged portion and splice the two ends together. As with any hardware implanted inside the body, infection is a risk. If a baby’s shunt becomes infected,  an operation is required to have it removed, followed by a two-week stay in hospital on IV antibiotics. Then, the baby must return to the operating room to have a new shunt installed. Thankfully, the infection rate for shunts at the Alberta Children’s Hospital is very low at 2.7 percent.

“Shunts are the workhorse method of treating babies with Hydrocephalus. They are always immediately successful in relieving pressure and the children do really well,” says Dr. Riva-Cambrin. “However, while our infection rate is well below the North American average, infections are a reality and incredibly hard on a family when they occur.”

The second and much newer procedure is called an Endoscopic Third Ventriculostomy with Choroid Plexus Cauterization (ETV+CPC). In this technique, the neurosurgeon uses a minimally-invasive instrument to create an opening in one of the brain’s ventricles, allowing trapped fluid to escape and circulate within the brain as it should. Another special tool is then used to cauterize some of the fluid-producing tissue, as well as the hole itself to prevent it from closing. Quite literally, the neurosurgeon alters the brain’s anatomy to allow fluid to flow naturally – eliminating the need for a shunt.

Dr. Riva-Cambrin is one of the world’s foremost experts in the ETV+CPC procedure, having introduced it to western Canada when he was recruited to our hospital in 2015.

“The ETV+CPC procedure is technically more difficult because it involves operating within millimetres of important structures, such as the brain stem or the parts responsible for functions such as speech or movement,” says Dr. Riva-Cambrin. “Considering what’s at stake, this method does come with an increased risk. However, when the procedure is over and has been successful, the child generally doesn’t require further operations. Because the body is programmed to heal itself, sometimes that hole will close and I have to go in and open it again.”

Because there are benefits and risks associated with each technique, there is no consensus amongst the world’s neurosurgeons on which procedure is better. Dr. Riva-Cambrin wants to change that.


First trial of its kind

Fourteen centres across Canada and the United States will recruit infants newly diagnosed with Hydrocephalus who are good candidates for either surgery. Half of the babies will be given a shunt and half will have the ETV+CPC procedure. They will then be followed for the next five years. Once they are ready for kindergarten, the five-year-olds will have neuropsychiatric assessments – including IQ tests – to measure their cognitive ability. The goal is to determine which surgical treatment ensures the best intellectual outcomes.

“Parents want their kids to be smart. They want them to grow up, go to university and have the best life possible,” says Dr. Riva-Cambrin. “With this study, we can finally end the debate as to which procedure is best and ensure we are doing everything in our power to not only save lives, but to help the children reach their highest potential.”

In 2015, our community funded a ground-breaking study at the Alberta Children’s Hospital that examined the novel ETV+CPC procedure for infant Hydrocephalus to help determine predictors for optimal candidates.

“We needed to understand which babies were safe to be treated and do well with either procedure. We needed to know that a future randomized study would be ethical. That initial research was absolutely vital to us being able to do this new study.”

With an additional grant from the University of Calgary, Dr. Riva-Cambrin’s team will also create the world’s first economic analysis to determine the costs involved in each method.


The ETV+CPC procedure was pioneered in Uganda in large part out of necessity. In Africa, the prevalence of Hydrocephalus in infants is high, but health resources to provide shunts and manage potential complications are limited. Blockages or infections caused by shunts can be fatal without timely access to neurosurgical expertise. Dr. Riva-Cambrin says this procedure is a great example of how the needs of developing nations can drive innovation with global benefits.


'We had one of the world's best helping our son'

Kylar was one of those fortunate babies who was a good candidate for both methods, and after Dr. Riva-Cambrin explained both procedures, Kylar’s parents opted for the ETV+CPC option.

For Peter and Lisa, the option of a ‘one and done’ surgery, with no internal hardware to cause potential future complications was very appealing.

“While we knew it was a riskier surgery because Dr. Riva-Cambrin would be operating very close to our son’s brain stem, as he put it, a few millimetres is a lot of room in his business.”

Upon learning of the Alberta Children’s Hospital’s leading role in the new Hydrocephalus study, Lisa was very philosophical.

“When Kylar was diagnosed, my only focus was on him surviving. I didn’t think too far into the future or what would happen later. I just wanted later. Now that we’ve had time to digest everything Kylar’s been through, we feel so fortunate and blessed that we had one of the world’s best helping our son. He brought that procedure here and is teaching other hospitals. We all experience hardships in our lives and to know there are such brilliant people in this world – at our very own hospital – working hard to give kids the best life, is inspiring.”


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