Three-year-old Conor has just celebrated his graduation from nursery after life-saving new treatment for rare one in a million condition. Conor was diagnosed with Vein of Galen aneurysmal malformation (VGAM), a rare congenital condition, when he was 11 months old.
Vein of Galen is a big blood vessel deep inside the brain that helps carry blood away from the brain and back to the heart. When this vein doesn’t form properly, the blood doesn’t flow in the right direction and can cause devastating consequences in children such as brain damage and heart failure.
Vein of Galen malformation is normally treated by blocking off the abnormal blood vessels by putting a catheter through a blood vessel in the groin up to the brain. Special glue-like materials are then used to close the problem vessels so blood flows in the right way again.
This method is less risky than open surgery and helps protect the brain and heart. In some rare cases, like Conor’s, the route from the groin to the brain can become blocked. In Conor’s case, the blood was draining to his vessels in the spinal cord and brain stem and slowly causing paralysis on his left side. Previously, there would have been no other treatment option until now.
Consultant Paediatric Neurosurgeon at Alder Hey, Mr Mallucci said: “Normally open surgery is deemed too risky for this type of malformation as it’s deep within the brain but if left untreated, Conor could have become paralysed.
“We needed to get the blood flowing in the right direction and away from the spinal cord quickly. Since we couldn’t access the veins as we normally would, we had to be creative- we performed a craniotomy, opening the skull to access the blood vessels, we then punctured the vessel draining the malformation and inserted a glue-type substance to block the blood flowing in the wrong areas.
“Planning this approach required careful input from a team of specialists, including interventional neuroradiologists and neurosurgeons and interventional radiologists, some of whom work between Alder Hey and The Walton Centre. Great Ormond Street Children’s Hospital (GOSH) attended to support and learn from the unique approach.
If we hadn’t designed this new technique, there would have been no other options for Conor and children like him, and the outcome would have been catastrophic.”
Mr Conor Mallucci, Consultant Paediatric Neurosurgeon
“We believe this is one of the first cases in the world reported where we successfully targeted and blocked off the blood supply using this open direct method. We are the only paediatric hospital in the UK to have an interoperative hybrid angiography theatre suite, a special operating room with advanced imaging machines that allows us to see real-time X-ray pictures of blood vessels during surgery.
“It allows combined endovascular and open surgery and helps us guide tools very precisely inside the body, especially when treating blood vessel problems in the brain or heart, making surgeries safer and more effective. Because of this special equipment and team of experts we were able to design this new technique to treat a condition which otherwise would have been impossible to treat.”
Conor had his operation on 5th March 2025 and was home by 15th March. He woke up happy and alert and asking for chips! He has just celebrated his third birthday.
“They not only saved his life, they saved ours too.”
Lucy, Conor’s Mum
Conor’s mum Lucy said: “Thank you just doesn’t cut it. The surgical and support teams have been astounding. Even the aftercare has been absolutely amazing. The team were thanking us for being brave and supporting them to do a new procedure which ultimately saved Conor’s life. They not only saved his life, they saved ours too.”
“Since surgery, Conor’s speech and cognition has gone from strength to strength. Before surgery his speech had ground to a halt, but now he surprises us every day with new words and phrases that he’s learned and it is amazing to hear his voice getting more confident every day. Turns out, he loves numbers, colours and shapes and loves to tell us about everything he sees when we’re out and about. He absolutely loves to read and has even memorised his favourites from cover to cover.
“Conor is a miracle in our eyes. We look at him every day with complete joy and admiration. Nothing could have prepared us for the journey he’s had in his short life so far. We are eternally grateful and thankful for the team at Alder Hey. Without them, our future as a family would have been non-existent. We can now look to the future with hope and excitement. Next stop; family holiday and we can’t wait!”