Toddler's Rare Condition Saved in Groundbreaking Surgery After Doctor Spotted Unusual Head Shape

A Rare Condition and a Groundbreaking Surgery

A toddler who was born with an extremely rare vein condition has made a remarkable recovery after undergoing a groundbreaking surgical procedure. Conor O’Rourke, now three years old, was diagnosed with a vein of Galen malformation, a condition that affects only ten to twelve babies each year in the UK. This disorder causes abnormal connections between veins and arteries in the brain, leading to increased blood flow and potentially severe complications if not treated.

Conor’s journey began when his mother, Lucy O’Rourke, took him to a doctor for a different issue—an apparent hernia—when he was around eight or nine months old. During the visit, the doctor noticed something unusual about the shape of his head. At first, Lucy was confused, as she had not considered anything wrong with her son. She explained that the doctor pointed out the size of his forehead and the visibility of veins on his temples and around his eyes. While they had noticed these features, they assumed it was due to his fair skin.

Despite the initial concerns, Conor met all his developmental milestones at the time, including sitting up. However, the conversation left Lucy unsettled, prompting her to contact her GP the next day. An MRI scan in March 2023 confirmed that there was a significant issue with Conor’s brain. The family was told they would need surgery, but the exact nature of the problem remained unclear.

After further scans and assessments by specialists, doctors identified the condition as a vein of Galen malformation. This was a rare diagnosis for the medical team in Bolton, and the family was left feeling helpless and overwhelmed. They were referred to Alder Hey Children’s Hospital in Liverpool, where Conor underwent three endovascular embolisations. This procedure involves 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 artery.

However, Conor belonged to a rare subgroup of patients where the veins had already blocked off, making it impossible for doctors to access the malformation through traditional methods. As a result, the jugular veins also became blocked, causing the brain's veins to try draining elsewhere. This led to swelling and damage to the brain stem and spinal cord, which threatened Conor’s development.

Surgeons had to take a different approach. They performed a high-risk open procedure through the skull to directly target the affected blood vessels. The operation was complex and required precision, but it proved successful. Today, Conor is considered “99 per cent cured,” with his problems effectively reversed. His parents describe him as a completely different child, showing significant improvement in both physical and neurological development.

Conor recently completed nursery and will start pre-school in September. Lucy expressed immense pride in her son’s resilience and strength. Her husband, Sean, has also pledged to run the Manchester Marathon next April to raise funds for Alder Hey Children’s Hospital, which played a crucial role in saving their son’s life.

The experience has been emotionally taxing for the family, but they are grateful for the care and support they received. Lucy said, “Thank you just doesn’t cut it.” For them, the hospital didn’t just save Conor’s life—they saved their entire family.