Baby's Life Saved by Groundbreaking Surgery After Rare Condition

A Rare Birth Defect and a Groundbreaking Medical Procedure

A seemingly simple observation about the size of a baby’s head led to the discovery of an extremely rare birth defect that would change the life of a young boy. The story of Conor O’Rourke, now 99% cured, highlights the power of medical innovation and the determination of a team of specialists at Alder Hey Children’s Hospital in Liverpool.

In 2023, when Conor was around eight or nine months old, his mother, Lucy O’Rourke, brought him to a doctor for a routine check-up related to his belly button. During the appointment, the doctor noticed something unusual about the size of his head. This small detail sparked a series of events that would ultimately lead to a diagnosis of Vein of Galen Malformation (VOGM), a rare condition that affects about one in a million children.

Lucy described the moment as terrifying. “I genuinely felt like I was living in a nightmare,” she said. “I felt like there was going to be a point where somebody was going to phone me and say, ‘Sorry, we’ve mixed up the scans, this isn’t your child, we’ve got it wrong.’” At that time, the family felt completely helpless, unsure of what the future held for their son.

Understanding Vein of Galen Malformation

VOGM is a rare condition that occurs during pregnancy, involving abnormal connections between arteries and veins in the brain. These connections cause the heart to work harder to supply blood to the brain, which can lead to serious complications if left untreated. Symptoms vary widely among affected children, with some showing signs immediately after birth and others developing issues later in life.

Common symptoms include an enlarged head due to hydrocephalus, prominent veins on the face, and dark circles under the eyes. In severe cases, the condition can also affect the heart, leading to heart failure if not addressed.

A Challenging Journey

Conor underwent three operations in 2023 to manage his VOGM, including procedures to block off arteries and insert catheters into his veins. However, over time, the veins in his body began to close off, making further treatment increasingly difficult. By 2024, doctors had exhausted all traditional options, and Conor was considered untreatable.

Despite this, his parents remained hopeful. After a year of recovery and physiotherapy, they were told that Conor wouldn’t need any more surgeries for a while. But soon, Lucy noticed that her son was struggling physically, limping on his left leg and showing signs of deterioration.

This prompted the medical team at Alder Hey to think outside the box. They developed a new technique to access the malformation through open surgery, bypassing the blocked veins and arteries that had previously made treatment impossible.

A New Surgical Approach

The high-risk operation involved accessing the affected blood vessels directly through the skull. This approach was risky, as it required careful navigation around critical areas of the brain. Surgeons had to be extremely cautious, as the procedure involved inserting a needle into a vein that had been blocked for some time.

The surgery took place in March 2024, and although doctors warned the family that Conor might need up to six weeks of hospital recovery, he surprised everyone by returning home just 10 days after the operation. He woke up asking for chips, a sign that he was recovering well.

Today, Conor is 99% cured and will not require any more surgeries. He will continue to have annual scans to monitor his brain and undergo an x-ray in five years to check his blood vessels. For Lucy, the journey has been both emotional and rewarding.

A New Beginning

Lucy expressed her relief and gratitude, saying, “No surgery now – unless we get broken arms or legs – but with something like that, we’re kind of like ‘bring it on.’ As long as it’s not more brain surgery, then we’ll probably be able to cope with that.”

The success of this groundbreaking procedure at Alder Hey Children’s Hospital marks a significant milestone in the treatment of VOGM. It showcases the importance of innovation in medicine and the dedication of healthcare professionals who are willing to push boundaries to save lives.