World-First Surgery Saves Toddler with Rare Condition After Doctor Notices Unusual Head Shape

A Rare Condition and a Groundbreaking Surgery

A toddler with an extremely rare vein condition was successfully treated in a world-first operation after a doctor noticed something unusual about his head. Conor O’Rourke, now three years old, was diagnosed with a Vein of Galen Malformation (VGM), a condition that affects only ten to twelve babies each year in the UK. This rare disorder causes abnormal connections between veins and arteries in the brain, which can lead to severe complications if not detected early.

Conor’s condition was initially overlooked, but it eventually became clear that standard treatments were not effective. This led surgeons to attempt a high-risk open procedure through the skull, a method that had never been used before for this specific type of malformation. Without the operation, Conor would have likely experienced progressive neurological decline over the next one or two years.

The surgery proved to be a success, and doctors now consider Conor to be “99 per cent cured.” His developmental issues have reversed, and he has become a completely different child. Lucy O’Rourke, Conor’s mother, shared her experience of how the diagnosis came about. She took her son to a doctor at eight or nine months old for an unrelated concern—a potential hernia. During the visit, the doctor examined Conor’s belly button but then asked about the shape of his head.

Lucy recalls being confused at the time. She did not think there was anything wrong with her baby, as she was focused on his overall health. However, the doctor noticed that Conor had a prominent forehead and visible veins on his temples and around his eyes. At first, the family thought it was simply due to his fair skin, but they later realized the signs were more significant than they had imagined.

At the time of the appointment, Conor had not yet learned to sit up on his own, but he had met all other developmental milestones. The doctor warned the family to seek emergency care if Conor suddenly started vomiting or became difficult to wake after sleeping. However, they were reassured that it might not be serious. Despite this, Lucy felt uneasy and called her GP the following day.

In March 2023, Conor underwent an MRI scan, and the family was not overly concerned until they were called into a family room for further discussion. At that point, doctors informed them that Conor had a “significant brain issue” requiring surgery. Specialists from another hospital reviewed the results and eventually diagnosed him with Vein of Galen Malformation. This was a new condition for the medical team in Bolton, and the family was left feeling helpless.

Conor was transferred to Alder Hey Children’s Hospital in Liverpool, where he underwent three endovascular embolisation procedures. These involve inserting a catheter into the arteries, usually from the groin, and using X-ray imaging to guide it to the affected area. A glue-like substance is then injected to block the problematic blood vessels. In some cases, the same procedure can be done through the veins.

However, Conor belonged to a rare subgroup of patients where the veins had already blocked off, making traditional treatment methods ineffective. As a result, the jugular veins in his neck also became obstructed, causing the brain’s veins to drain elsewhere. This led to swelling and damage to his brain stem and spinal cord, worsening his condition.

Surgeon Conor Mallucci explained that the situation required urgent action. “It’s a fight against time,” he said. “This happened quite early in Conor, which is why we had to come up with an alternative route.”

The groundbreaking operation involved accessing the malformation directly through Conor’s skull, targeting the affected blood vessels. The procedure was complex and carried significant risks, but it ultimately saved Conor’s life.

Today, Conor has graduated from nursery and will start pre-school in September. Lucy O’Rourke expressed immense pride in her “resilient” son. Her husband, Sean, has also pledged to run the Manchester Marathon in April to raise funds for Alder Hey Children’s Hospital.

“We are so grateful,” Lucy said. “They not only saved his life, they saved ours too.”