Latest news with #ConorORourke
The Sun
4 days ago
- Health
- The Sun
My GP was alarmed by my son's large forehead – it was a symptom of killer that I'd never noticed
CONOR O'Rourke was just nine months old when doctors noticed his "pronounced forehead" during an unrelated appointment. His mum, Lucy O'Rourke, 36, had taken her three-year-old to a consultant about a problem with his belly button. 6 But instead of leaving with reassurance, she was told something far more worrying, her little boy's head looked "quite" large. The doctor said Lucy her son had "a pronounced forehead" and "very visible veins on his forehead, and his temples, around his eyes." These would all turn out to be the first signs of a rare and deadly brain defect called galen malformation (VOGM), that could have killed him within years. It happens when veins and arteries in the brain connect abnormally, flooding it with blood and putting him at risk of heart failure and brain damage. The condition, which can be fatal, affects roughly 10 to 12 babies in the UK every year. 'I genuinely felt like I was living in a nightmare," Lucy, from Bolton, 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'. 'We just cried and sat in silence for hours. We just didn't know what to do with ourselves.' The treatment for VOGM 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, and 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. How to check your pulse, for risk of stroke Doctors at Alder Hey Children's Hospital in Liverpool carried out three of these procedures on Connor in 2023. But each time, the abnormal connections kept finding another route. By the end of the year, things had taken a frightening turn. Conor's jugular veins, the major vessels in the neck, had blocked completely, forcing blood to drain into his brain stem and spinal cord. He even suffered a small stroke after his third operation in November 2023. Around a year later, and after physiotherapy, the toddler's family were told he was not in a position for more operations and they would scan him in 12 months' time. 6 6 6 'In early December, I started to notice that physically he was struggling," Lucy said, "and he was limping quite a bit on his left leg.' By this point, Conor was essentially 'untreatable", his paediatric neurosurgeon Conor Mallucci said, and had 'run out of all his options'. It was causing swelling and damage to the brain stem and spinal cord, leading him to deteriorate. Mr Mallucci: 'It's a fight against time… you're left with an untreatable malformation that's still supplying abnormal blood to the veins.' With no other options left, the team came up with a high-risk, never-before-attempted procedure in children - open brain surgery to access the blocked veins directly. Alder Hey is one of only two centres in the UK equipped to carry out this procedure on children. The hospital has a state-of-the-art theatre with advanced imaging machinery, giving specialists real-time X-ray pictures of blood vessels during operations and allowing them to combine endovascular and open surgery. The technique has never been performed at another hospital. Mr Mallucci said: 'Exposing these veins that were blocked at the jugular level is high risk. You lose blood. It's a big operation, and to put a needle directly into one of those is a little bit hair raising.' 'Woke up from surgery asking for chips' Lucy had to sign off on the surgery, knowing the dangers but also knowing without it, her little boy's condition would only get worse. Doctors warned Conor would be wiped out for days and could be in hospital for up to six weeks. Instead, to everyone's amazement, he woke up soon after surgery asking for chips. Lucy laughed: 'I obviously went into mum mode and said 'can we get some chips in here please?'' Just 10 days later, the family were home and Conor was already showing signs of a remarkable recovery. Now aged three, Conor recovered well and is now considered "99 per cent cured" by Mr Mallucci. He has left nursery and will be attending pre-school in September. "He's not only recovered well, everything that he had going bad was reversed," Mr Mallucci said. "He's become a different child, really, it's like he's suddenly been released.' "Conor is now '99 per cent cured' and will only need yearly scans, with a possible check-up angiogram in a few years. Lucy said: '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 Alder Hey team have now performed the new technique on two children, including Conor, and have a third case planned. 6 When is a big forehead a sign of something seirous? A prominent forehead in babies, known as frontal bossing, is typically harmless. But in rare cases, it can be a red flag for underlying conditions. It can be linked to genetic disorders, bone or hormone problems, or issues with brain development. Possible causes include: Craniosynostosis - when skull bones fuse too early, affecting head shape. Metabolic disorders - such as rickets or certain storage diseases Genetic syndromes - like Apert, Crouzon or Pfeiffer syndrome Growth hormone excess - which can cause enlarged facial features Doctors may order scans or blood tests if the forehead looks unusually pronounced or is paired with other symptoms, like delayed development, unusual facial features, or health issues. Most cases are nothing to fear, but if you're worried, get your child checked. Source: Healthline
The Independent
5 days ago
- Health
- The Independent
How baby's head size led to rare medical diagnosis
A baby boy has been successfully treated for a one-in-a-million brain condition using a pioneering surgical technique, after doctors spotted the rare illness during an unrelated check-up. Conor O'Rourke, now aged three, underwent the world-first procedure for Vein of Galen Malformation (VOGM) at Alder Hey Children's Hospital in Liverpool. The condition, which affects approximately 10 to 12 babies in the UK annually, causes the veins and arteries in the brain to connect abnormally. This leads to increased blood flow and can result in severe complications if undetected. Conor was part of a rare subgroup of patients, meaning conventional treatments were ineffective for his specific case. His mother, Lucy O'Rourke, 36, from Bolton, described the last couple of years as an "out of body experience" for her and husband Sean O'Rourke, 38, as they navigated their son's rare condition. She recalled that Conor was around eight or nine months old when she took him to an appointment for a potential umbilical hernia, a usually 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.' Mrs O'Rourke 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. '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.' Mrs O'Rourke 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, Mrs O'Rourke said the conversation 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 with Conor but told the family he had a 'significant brain issue' that would require surgery. The results were assessed by specialists at another hospital, with more scans ordered for Conor. '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,' Mrs O'Rourke said. 'But in reality, they'd never seen it before in Bolton.' Mrs O'Rourke said the experience was 'terrifying' and the couple felt 'helpless'. 'Throughout the whole of this, really, it's definitely been a bit of an out of body experience,' she told PA. Conor was sent to Alder Hey and had three operations called endovascular embolisations, which 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, and 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. 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 surgeon, Conor Mallucci, this was causing swelling and damage to the toddler's brain stem and spinal cord, leading him to deteriorate. Mr Mallucci told PA: '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 involved accessing the malformation through Conor's skull to target the affected blood vessels. He recovered well and is now considered '99 per cent cured' by Mr Mallucci. Mrs O'Rourke said the family feels lucky in some ways. She 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 with his peers in September. Mrs O'Rourke said she is 'so proud' of her 'resilient' son, adding: '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.' Mr O'Rourke has also committed to running the Manchester Marathon next April to raise money for Alder Hey. 'Thank you just doesn't cut it,' Mrs O'Rourke said. 'They not only saved his life, they saved ours too.'
Daily Mail
5 days ago
- Health
- Daily Mail
Toddler with a one-in-a-million vein condition was saved in a world-first operation after a doctor remarked on his unusually shaped head
A toddler with a one-in-a-million vein condition was saved in a world-first operation after a doctor remarked on his unusually shaped head. Conor O'Rourke, now three, was diagnosed with vein of galen malformation, which affects ten to 12 babies a year in the UK. It causes the veins and arteries in the brain to connect abnormally, increasing blood flow and leading to severe complications if undetected. However, the usual treatment did not work - prompting surgeons to attempt a novel 'high risk' open procedure through the skull. Connor was struggling with his development, limping when he walked and would have deteriorated neurologically over a year or two without the operation. But medics say he is now considered '99 per cent cured', his problems have 'reversed' and he has become a 'different child'. Lucy O'Rourke, 36, from Bolton, said her son's condition was only diagnosed when she took him to a doctor about an unrelated potential hernia aged eight or nine months. She said: 'The doctor was looking at his 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.' Mrs O'Rourke 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.' Mrs O'Rourke 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, Mrs O'Rourke said the conversation 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 with Conor but told the family he had a 'significant brain issue' that would require surgery. The results were assessed by specialists at another hospital, with more scans ordered for Conor. '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,' Mrs O'Rourke said. 'But in reality, they'd never seen it before in Bolton.' Mrs O'Rourke said the experience was 'a living nightmare' and her and her husband Sean O'Rourke, 38 felt 'helpless'. Conor was sent to Alder Hey Children's Hospital in Liverpool and had three operations called endovascular embolisations, which 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, and 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. 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 surgeon, Conor Mallucci, this was causing swelling and damage to the toddler's brain stem and spinal cord, leading to him to deteriorate. Mr Mallucci 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 involved accessing the malformation through Conor's skull to target the affected blood vessels. Conor recently graduated from nursery and will be attending pre-school with his peers in September. Mrs O'Rourke said she is 'so proud' of her 'resilient' son. Mr O'Rourke has also committed to running the Manchester Marathon next April to raise money for Alder Hey. 'Thank you just doesn't cut it,' Mrs O'Rourke said. 'They not only saved his life, they saved ours too.'
The Independent
5 days ago
- Health
- The Independent
Surgeons use new technique to save life of little boy with rare condition
Surgeons have used a new technique to save the life of a toddler who was born with an extremely rare birth defect in what is thought to be a world first. Conor O'Rourke, now three, was diagnosed with vein of galen malformation (VOGM) as a baby after a doctor raised concerns about the size of his head at an appointment for an unrelated issue. The condition causes the veins and arteries in the brain to connect abnormally, increasing blood flow and leading to severe complications such as heart failure and brain damage, and death if undetected. The toddler from Bolton is one of a rare subgroup of patients with VOGM which left him essentially untreatable. Specialists at Alder Hey Children's Hospital in Liverpool performed the novel technique, which involved open surgery deemed 'high risk', in March. Conor, who has since recovered well, would have deteriorated neurologically over a year or two without the operation, according to specialists. His surgeon told the PA news agency the boy is now considered '99% cured' and has become a 'different child'. Conor was around eight or nine months old when his mum Lucy O'Rourke, 36, took him to an appointment with a consultant over an issue with his belly button. However, while there, the doctor raised concerns about the size of her baby's head. Conor was eventually diagnosed with VOGM in March 2023, which his mum said was 'terrifying'. The condition causes arteries to connect directly to the vein of galen – a deep vein in the brain that drains blood from the brain back to the heart – rather than connecting to capillaries, which would slow down blood flow. It affects roughly 10 to 12 babies in the UK every year. Mrs O'Rourke told PA: 'I genuinely felt like I was living in a nightmare, and 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', and we just felt completely helpless in that moment in time. 'We just cried and sat in silence for hours. We just didn't know what to do with ourselves.' The treatment for VOGM 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, and 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 had three of these operations in 2023. Conor Mallucci, a consultant paediatric neurosurgeon at Alder Hey, told PA: '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.' When this happens, the jugular veins – a set of major blood vessels in the neck – block off. 'That's rare to this condition, but it's specific to this condition,' Mr Mallucci said. 'And when the jugular veins block off, which happened in Conor, the veins from the brain try and drain elsewhere. '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.' Mrs O'Rourke told PA her son suffered a small stroke after his third operation in November 2023. Around a year later, and after physiotherapy, the toddler's family were told he was not in a position for more operations and they would scan him in 12 months' time. While his parents were initially 'so happy' to have a year with no scans, they soon noticed their son was struggling. Mrs O'Rourke said: 'In early December, I started to notice that physically he was struggling, and he was limping quite a bit on his left leg.' Mr Mallucci said, by this point, Conor was essentially 'untreatable' and had 'run out of all his options'. '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,' he added. 'You couldn't get into his head through the veins, because the jugular veins have blocked off, and you can't block off through the artery any more. 'So that's when we came up with our technique, which is to access the veins through 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 centres in the UK equipped to carry out this procedure on children. The hospital has a state-of-the-art theatre with advanced imaging machinery, giving specialists real-time X-ray pictures of blood vessels during operations and allowing them to combine endovascular and open surgery. The technique has never been performed at another hospital. Mr Mallucci told PA: 'Exposing these veins that were blocked at the jugular level is high risk. 'You lose blood. It's a big operation, and to put a needle directly into one of those is a little bit hair raising, so we had to be very careful about that.' Medics told Mrs O'Rourke her son would 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. Mrs O'Rourke 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.' Mr Mallucci told PA Conor is 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 – when a dye is injected into the bloodstream to allow doctors to capture images of blood vessels using X-ray – in around four to five years. Mrs O'Rourke said: '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.' Specialists at Alder Hey have performed the new technique on two patients, including Conor, and have a third lined up.
