What is Vein of Galen Malformation?

In a person with Vein of Galen malformation (VOGM), arteries connect directly to veins deep in the brain without the normal network of capillaries in between. Without this slowing mechanism, blood rushes at high pressure into the brain’s deep veins, placing strain on the heart and affecting brain function.

The condition can cause a range of serious problems, including heart failure, a build-up of fluid in the brain (hydrocephalus), seizures, developmental delays, and sometimes bleeding within the brain. If left untreated, it carries a very high risk of death—some estimates put mortality at more than three-quarters of cases. Even when treated, the risks remain significant.

Most children diagnosed with VOGM undergo a less invasive treatment known as endovascular embolization. In this procedure, doctors insert a catheter—typically through the groin—and navigate it through the blood vessels until it reaches the abnormal connection in the brain. Special materials are then placed to block the abnormal connections. This technique has transformed survival rates and outcomes for many patients.

A Different Kind of Challenge

For Conor O’Rourke, a three-year-old from Liverpool, standard treatment was not enough. His VOGM was first picked up during a routine check, when a consultant spotted that the shape of his head seemed unusual. Further investigation confirmed the diagnosis—but his case would prove far from straightforward.

But surgeons discovered a major complication—his jugular veins were blocked. This prevented them from reaching the malformation via the normal route, leaving the swelling unchecked and causing damage to his brainstem and spinal cord.

Faced with no viable alternative, neurosurgeon Conor Mallucci and his team at Alder Hey Children’s Hospital designed a new approach. In March, they carried out what is believed to be the world’s first direct open-skull operation for this type of VOGM. By accessing the malformation directly through the skull, they were able to treat it successfully.

Conor’s recovery was described as remarkable. According to his surgical team, he is now “99 per cent cured” and doing well.

Why This Breakthrough Matters

This breakthrough offers hope for children with high-risk cases of Vein of Galen malformation, particularly those whose anatomy or blocked vessels make traditional embolization impossible. By creating an entirely new treatment pathway, it addresses situations where no viable options previously existed and survival chances were low.

Conor’s case also highlights the critical role of early detection—his diagnosis was made possible when an attentive doctor noticed subtle signs during a routine check-up, allowing intervention before further damage occurred.

Finally, it underlines the value of specialist expertise, as Alder Hey is one of only two centers in the UK equipped to carry out such complex pediatric neurosurgery.

Around the world, researchers are also looking at treating VOGM before a baby is born.

In the United States, specialists recently performed the first in-utero embolization, using ultrasound to guide a microcatheter into a fetus’s brain and place small coils to slow blood flow. The baby was delivered with improved heart function and no signs of brain injury. While still experimental, such procedures hint at the possibility of preventing damage before it starts.

The Road Ahead

Even with the best treatment, VOGM is a lifelong condition that requires careful follow-up. Children may need ongoing input from neurosurgeons, cardiologists, neurologists, and developmental specialists to monitor growth and learning.

Historical data from Great Ormond Street Hospital between 2003 and 2008 found that among children who survived treatment, 39% developed normally, 21% had mild developmental delays, and 18% had more significant challenges. These figures show why surgical advances like the one at Alder Hey could make such a difference—not just in saving lives, but in improving how those lives are lived.

[Source: 1,2]

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A Quiet Shift in Winter 2024-25

Behind the scenes, however, America’s youngest experienced a very different RSV season. This was the first time two preventive interventions—a pandemic-era maternal vaccine and a monoclonal antibody injection—were widely available.

The first is given in third-trimester pregnancy; the second, a drug called Nirsevimab, to newborns in RSV season or, alternatively, as soon as they re-enter it. Both give infants pre-made defenses before their own immune systems can mount a defense.

This was then followed by a dramatic decrease in infant hospitalizations. The CDC said that infants under two months experienced a decline of as much as 71% from pre-pandemic years. For all infants under seven months of age, it was as much as a decline of 56%—a seismic change in children’s health.

During a more severe virus season than usual, not as many babies found themselves in intensive care, hooked up to machines to breathe or sucking to unclog lungs.

Why The Youngest Benefited Most

Timing was everything. Babies delivered during RSV season received either direct monoclonal protection or protective antibodies from vaccinated mothers.

These treatments were often given before symptoms had a chance to set in. And since these treatments target only the virus’s entry mechanisms, they serve as a targeted protection—instead of a broad immune system enhancement.

Earlier in the season, babies who were delivered experienced the most reliable protection, particularly in areas where the resources were provided in a timely manner.

While children older than eight months—most of whom did not qualify for either intervention—experienced a different pattern, hospitalizations for children aged 1–4 years and 5–17 years actually increased during this past winter.

Experts attribute this not to a behavioral or testing change but to a lack of protection. That is, older children faced a more robust virus season with no additional defenses.

What’s Next for Prevention of RSV?

Take Carla, a nurse from rural Oregon. Her five-year-old daughter was born mere months prior to the vaccine’s clearance. At age eight weeks, she came down with RSV and was airlifted to a hospital 100 miles away. “She spent three days in an oxygen tent,” Carla remembers. “I saw her ribs caving in with each breath. I’d have done anything to avoid that.” And yet, now, she’s pregnant again—but with a difference: a vaccine.

Public health experts hold out hope. With increasing coverage and providers delivering interventions early in each season, gains could grow.

This winter provided a glimpse of what can happen with widespread, timely protection. But it also made clear that continued education, access to underserved populations, and attention to older children still vulnerable to it remained priorities.

What started quietly—two newly available doses—has transformed the RSV story for infants. The hospital beds previously filled with ailing newborns can, in time and forethought, become a less common occurrence.

[Source: 1,2]

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