Little Conor O’Rourke was diagnosed with a one-in-a-million condition when he was just a few months old after being taken to the doctors
Receiving a loving hug from mum, little Conor O’Rourke has undergone a world’s first operation after a doctor raised concerns about his “large head”.
The youngster was diagnosed with a one-in-a-million condition when he was just a few months old after being taken to the doctors for an unrelated issue.
During the check up a consultant asked about his “pronounced forehead” – which led to Conor, now three, being diagnosed with vein of galen malformation (VOGM) – a condition affecting roughly 10 to 12 babies in the UK each year. It comes after a doctor’s warning to people who drink even a ‘single cup of tea’.
READ MORE: Mindless yobs damage 41 cars in vandalism rampage through sleepy market townREAD MORE: Shocking moment speeding biker ploughs into trainee teacher as she got off bus
It causes the veins and arteries in the brain to connect abnormally, increasing blood flow and leading to severe complications if undetected. Conor has now been treated with a new surgical technique by specialists at Alder Hey Children’s Hospital in Liverpool in what is thought to be a world-first.
Mum Lucy, 36, from Bolton, described the last couple of years as an “out of body experience” for her and husband Sean, 38.
She said Conor was around eight or nine months old when she took him to an appointment for a potential umbilical hernia – usually a harmless condition when the intestines bulge through the opening in muscle near the belly button.
She said: “He was looking at his belly button, and then suddenly wanted to ask me questions about his head. And obviously I was slightly confused at that point. I didn’t really know what the issue was, I’m just looking at my beautiful baby, and didn’t think that there was an issue.”
Lucy said the consultant asked about the shape of her son’s head, adding: “He felt like he had quite a pronounced forehead, it was quite a large head. And he had very visible veins on his forehead, and his temples, round his eyes. And we had seen those things, but obviously we didn’t in a million years think that there was something sinister going on. We thought he was very fair skinned, and that was why we could see his veins.”
She added: “Looking back now, I look at pictures, and I think, ‘oh yeah, you can sort of see now’, knowing what we know. But in that moment in time, I was a new mum, first-time mum, didn’t really spot anything untoward, really.”
Lucy said that at the time of the appointment, Conor had not yet sat up on his own but had met all his other milestones. She was warned to take her son to A&E if he suddenly started vomiting or was difficult to rouse after sleeping, although she was reassured it was probably nothing to worry about.
However, she said the information played on her mind, and she called her GP the following day. Conor was sent for an MRI in March 2023 and the couple were not worried until they were called into a family room.
At that stage, doctors did not know what was wrong but told the family he had a “significant brain issue” that would require surgery. They also ordered more scans.
Lucy said: “It was only after those scans that they said to us that they think that it’s vein of galen malformation and then started to explain to us a little bit what that meant. But in reality, they’d never seen it before in Bolton.”
She said the experience was “terrifying” and the couple felt “helpless, adding: “Throughout the whole of this, really, it’s definitely been a bit of an out of body experience.”
Conor was sent to Alder Hey and had three operations called ‘endovascular embolisations’, which involve inserting a small, flexible tube called a catheter into the arteries, usually from the groin.
Medics used X-ray imaging to guide the tube through the body and into place, and then injected a glue-like substance to block off the artery.
However, Conor is one of a rare subgroup of patients where veins block off and doctors can no longer get to the malformation.
When this happens, the jugular veins – a set of major blood vessels in the neck – also block off, causing the veins from the brain to try and drain elsewhere.
According to the toddler’s neurosurgeon, Conor Mallucci, this was causing swelling and damage to the toddler’s brain stem and spinal cord, leading to him to deteriorate.
He said: “It’s a fight against time, and that happened quite early in Conor, which is why we had to come up with this alternative route.”
The operation they carried out involved accessing the malformation through Conor’s skull to target the affected blood vessels. He recovered well and is now considered “99% cured”.
Medics told Lucy her son would be very tired after surgery and was expected to sleep for around a week and remain in hospital for up to six weeks.
However, Conor woke up soon after the operation asking for chips and the family were home after 10 days. She said: “I obviously went into mum mode and said ‘can we get some chips in here please?”
Speaking of Conor’s recovery, Mr Mallucci said: “He’s not only recovered well, everything that he had going bad was reversed. He’s become a different child, really, it’s like he’s suddenly been released.”
He added: “Conor had already had those procedures, both from the artery and the vein, but after a while, in a rare subgroup of these patients, the veins block off and you can no longer get to the malformation.
“And you can’t get up there through the artery either, and so you’re left with an untreatable malformation that’s still supplying abnormal blood to the veins.”
He said: “In his case, he had all these abnormal channels draining to his brain stem and spinal cord. And that results in swelling and damage, which is why he was deteriorating over time.”
Lucy said: “As much as I feel like this is an incredibly unlucky diagnosis, I sometimes have to pull that back and think actually we were incredibly lucky in a lot of ways.
“We were already under a consultant at Royal Manchester Children’s, who mentioned something. And then we were also incredibly lucky, in a way, that I’m very much an over-thinker, and I was an anxious mum, to not leave it there.
“And thank goodness that we did. Because if we didn’t, I don’t know where we would actually be.”
Conor recently graduated from nursery and will be attending pre-school in September.
His mum said she is “so proud” of her son: “At one point they were saying, ‘we may want to hold him back’ and ‘maybe it might be a bit too much for him’. But they’ve said now that they think he’s doing incredibly well. That’s brilliant. And it was just magical to see him.”
She has now signed up to run the Manchester Marathon next April to raise money for Alder Hey. She said: “Thank you just doesn’t cut it. They not only saved his life, they saved ours too.”
