Surgeons Save Boy with Rare Condition Using New Technique

A Groundbreaking Surgical Procedure Saves a Toddler's Life

A groundbreaking surgical procedure has saved the life of a toddler who was born with an extremely rare birth defect, marking what is believed to be a world first. The child, Conor O’Rourke, now three years old, was diagnosed with a vein of Galen malformation (VOGM) as an infant after a doctor raised concerns about the size of his head during an unrelated medical appointment.

VOGM is a condition where the veins and arteries in the brain connect abnormally, causing increased blood flow and leading to severe complications such as heart failure, brain damage, and even death if undetected. For Conor, the condition placed him in a rare subgroup of patients that was considered essentially untreatable.

Specialists at Alder Hey Children’s Hospital in Liverpool performed a novel technique involving open surgery, which was deemed “high risk.” The operation took place in March, and since then, Conor has made a remarkable recovery. According to specialists, he would have deteriorated neurologically over the course of a year or two without the surgery.

Conor’s surgeon told the PA news agency that the boy is now considered “99% cured” and has become a “different child.” His mother, Lucy O’Rourke, described the experience as “terrifying” when they received the diagnosis in March 2023. She said she felt like she was living in a nightmare and was completely helpless.

The treatment for VOGM typically involves inserting a small, flexible tube called a catheter into the arteries, usually from the groin. Medics use X-ray imaging to guide the tube through the body and into place, then inject a glue-like substance to block off the artery. In some cases, the same procedure can be performed by inserting the catheter into the veins.

Conor underwent three of these operations in 2023, but eventually, the veins blocked off, making further treatment impossible. This led to the development of a new approach involving open surgery beyond the blockage. The operation involved accessing the malformation through the skull to target the affected blood vessels.

Alder Hey is one of only two centers in the UK equipped to carry out this procedure on children. The hospital has a state-of-the-art theatre with advanced imaging machinery, allowing specialists to combine endovascular and open surgery during operations. The technique has never been performed at another hospital.

Mr. Mallucci, a consultant pediatric neurosurgeon at Alder Hey, explained that exposing the blocked veins was a high-risk procedure. He noted that the operation required careful precision, as it involved placing a needle directly into one of the major veins. Despite the risks, the surgery was successful, and Conor recovered quickly.

Mrs. O’Rourke shared that her son woke up soon after the operation asking for chips, and the family was home after just 10 days. Mr. Mallucci emphasized that Conor’s recovery was extraordinary, with everything that had been going wrong reversed. He is now considered “99% cured” and will not need any more operations. Instead, he will have annual scans to monitor his brain and potentially have an angiogram in around four to five years.

Mrs. O’Rourke expressed relief that there will be no more surgeries unless they involve broken arms or legs. She said they are ready to face any challenges as long as they don’t involve more brain surgery.

Specialists at Alder Hey have performed the new technique on two patients, including Conor, and have a third lined up. This innovative approach offers hope for other children with similar conditions and highlights the importance of continued advancements in pediatric neurosurgery.