{"id":326558,"date":"2025-08-08T00:44:14","date_gmt":"2025-08-08T00:44:14","guid":{"rendered":"https:\/\/www.europesays.com\/uk\/326558\/"},"modified":"2025-08-08T00:44:14","modified_gmt":"2025-08-08T00:44:14","slug":"surgeons-use-new-technique-to-save-life-of-little-boy-with-rare-condition","status":"publish","type":"post","link":"https:\/\/www.europesays.com\/uk\/326558\/","title":{"rendered":"Surgeons use new technique to save life of little boy with rare condition"},"content":{"rendered":"

Conor O\u2019Rourke, 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.<\/p>\n

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.<\/p>\n

The toddler from Bolton is one of a rare subgroup of patients with VOGM which left him essentially untreatable.<\/p>\n

Specialists at Alder Hey Children\u2019s Hospital in Liverpool performed the novel technique, which involved open surgery deemed \u201chigh risk\u201d, in March.<\/p>\n

\"ConorConor O\u2019Rourke, three, pictured with his surgeon Conor Mallucci (Alder Hey\/PA)<\/p>\n

Conor, who has since recovered well, would have deteriorated neurologically over a year or two without the operation, according to specialists.<\/p>\n

His surgeon told the PA news agency the boy is now considered \u201c99% cured\u201d and has become a \u201cdifferent child\u201d.<\/p>\n

Conor was around eight or nine months old when his mum Lucy O\u2019Rourke, 36, took him to an appointment with a consultant over an issue with his belly button.<\/p>\n

However, while there, the doctor raised concerns about the size of her baby\u2019s head.<\/p>\n

Conor was eventually diagnosed with VOGM in March 2023, which his mum said was \u201cterrifying\u201d.<\/p>\n

The condition causes arteries to connect directly to the vein of galen \u2013 a deep vein in the brain that drains blood from the brain back to the heart \u2013 rather than connecting to capillaries, which would slow down blood flow.<\/p>\n

It affects roughly 10 to 12 babies in the UK every year.<\/p>\n

Mrs O\u2019Rourke told PA: \u201cI 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, \u2018sorry, we\u2019ve mixed up the scans, this isn\u2019t your child, we\u2019ve got it wrong\u2019, and we just felt completely helpless in that moment in time.<\/p>\n

\u201cWe just cried and sat in silence for hours. We just didn\u2019t know what to do with ourselves.\u201d<\/p>\n

The treatment for VOGM involves inserting a small, flexible tube called a catheter into the arteries, usually from the groin.<\/p>\n

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.<\/p>\n

In some cases, the same procedure can be performed by inserting the catheter into the veins.<\/p>\n

Conor had three of these operations in 2023.<\/p>\n

Conor Mallucci, a consultant paediatric neurosurgeon at Alder Hey, told PA: \u201cConor 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.<\/p>\n

\u201cAnd you can\u2019t get up there through the artery either, and so you\u2019re left with an untreatable malformation that\u2019s still supplying abnormal blood to the veins.\u201d<\/p>\n

When this happens, the jugular veins \u2013 a set of major blood vessels in the neck \u2013 block off.<\/p>\n

\u201cThat\u2019s rare to this condition, but it\u2019s specific to this condition,\u201d Mr Mallucci said.<\/p>\n

\u201cAnd when the jugular veins block off, which happened in Conor, the veins from the brain try and drain elsewhere.<\/p>\n

\u201cIn 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.\u201d<\/p>\n

Mrs O\u2019Rourke told PA her son suffered a small stroke after his third operation in November 2023.<\/p>\n

Around a year later, and after physiotherapy, the toddler\u2019s family were told he was not in a position for more operations and they would scan him in 12 months\u2019 time.<\/p>\n

While his parents were initially \u201cso happy\u201d to have a year with no scans, they soon noticed their son was struggling.<\/p>\n

Mrs O\u2019Rourke said: \u201cIn early\u00a0December, I started to notice that physically he was struggling, and he was limping quite a bit on his left leg.\u201d<\/p>\n

\"ConorConor recovering in hospital after surgery with his parents (Lucy O\u2019Rourke\/PA)<\/p>\n

Mr Mallucci said, by this point, Conor was essentially \u201cuntreatable\u201d and had \u201crun out of all his options\u201d.<\/p>\n

\u201cIt\u2019s a fight against time, and that happened quite early in Conor, which is why we had to come up with this alternative route,\u201d he added.<\/p>\n

\u201cYou couldn\u2019t get into his head through the veins, because the jugular veins have blocked off, and you can\u2019t block off through the artery any more.<\/p>\n

\u201cSo that\u2019s when we came up with our technique, which is to access the veins through open surgery beyond the blockage.\u201d<\/p>\n

The operation involved accessing the malformation through the skull to target the affected blood vessels.<\/p>\n

Alder Hey is one of only two centres in the UK equipped to carry out this procedure on children.<\/p>\n

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.<\/p>\n

The technique has never been performed at another hospital.<\/p>\n

Mr Mallucci told PA: \u201cExposing these veins that were blocked at the jugular level is high risk.<\/p>\n

\u201cYou lose blood. It\u2019s 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.\u201d<\/p>\n

Medics told Mrs O\u2019Rourke 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.<\/p>\n

However, Conor woke up soon after the operation asking for chips and the family were home after 10 days.<\/p>\n

Mrs O\u2019Rourke said: \u201cI obviously went into mum mode and said \u2018can we get some chips in here please?\u201d<\/p>\n

Speaking of Conor\u2019s recovery, Mr Mallucci said: \u201cHe\u2019s not only recovered well, everything that he had going bad was reversed.<\/p>\n

\u201cHe\u2019s become a different child, really, it\u2019s like he\u2019s suddenly been released.\u201d<\/p>\n

Mr Mallucci told PA Conor is considered \u201c99% cured\u201d and will not need any more operations.<\/p>\n

Instead, he will have annual scans to monitor his brain and potentially have an angiogram \u2013 when a dye is injected into the bloodstream to allow doctors to capture images of blood vessels using X-ray \u2013 in around four to five years.<\/p>\n

Mrs O\u2019Rourke said: \u201cNo surgery now \u2013 unless we get broken arms or legs \u2013 but with something like that, we\u2019re kind of like \u2018bring it on\u2019.<\/p>\n

\u201cAs long as it\u2019s not more brain surgery, then we\u2019ll probably be able to cope with that.\u201d<\/p>\n

Specialists at Alder Hey have performed the new technique on two patients, including Conor, and have a third lined up.<\/p>\n","protected":false},"excerpt":{"rendered":"Conor O\u2019Rourke, now three, was diagnosed with vein of galen malformation (VOGM) as a baby after a doctor…\n","protected":false},"author":2,"featured_media":326559,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[8815],"tags":[748,393,4884,179,16,15],"class_list":{"0":"post-326558","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-liverpool","8":"tag-britain","9":"tag-england","10":"tag-great-britain","11":"tag-liverpool","12":"tag-uk","13":"tag-united-kingdom"},"share_on_mastodon":{"url":"https:\/\/pubeurope.com\/@uk\/114990381311883237","error":""},"_links":{"self":[{"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/posts\/326558","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/comments?post=326558"}],"version-history":[{"count":0,"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/posts\/326558\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/media\/326559"}],"wp:attachment":[{"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/media?parent=326558"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/categories?post=326558"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/tags?post=326558"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}