How baby's head size led to rare medical diagnosis
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.'
Try Our AI Features
Explore what Daily8 AI can do for you:
Comments
No comments yet...
Related Articles
Medscape
17 minutes ago
- Medscape
Violence Against Nurses Surges in ‘Tinderbox' A&Es
Violence against A&E staff in England has almost doubled over the past 5 years, with nursing leaders warning that chronic understaffing, long waits, and corridor care are fuelling the rise. The Royal College of Nursing (RCN) said that more than 4000 incidents of physical violence were recorded in 2024, compared with just over 2000 in 2019. It urged the government to take decisive action, warning that without change its 10-Year Health Plan would 'fail completely'. In one Kent hospital, cases of violence against staff increased by more than 500%, from 13 in 2019 to 89 last year. At a Bristol hospital, incidents almost doubled from 83 to 152 in the same period. Punching, spitting, and acid attack threats were among the behaviours staff in emergency departments regularly face, according to the RCN. The figures came from a Freedom of Information request sent to NHS trusts, with 89 out of a possible 129 trusts responding. Long Waits Fuel Tensions Analysis of NHS data by the RCN also found that waits of more than 12 hours in A&E had risen more than 20-fold over the same period. On a typical working day, a member of emergency department staff in England is attacked every hour, the RCN said. Long delays were also causing anger among patients who were not typically violent. Senior charge nurse Rachelle said that 'even patients you would expect to be placid are becoming irate because of just how long they have to wait'. One senior A&E nurse described her hospital as a 'tinder box' for violence. She had seen colleagues punched, kicked and threatened with a gun, and had herself been spat at and threatened with an acid attack. The incidents caused depression and anxiety, prompting her to take a secondment in research to step away from the frontline. Recruitment Concerns Earlier this week, the government launched a Graduate Guarantee scheme, promising jobs for newly qualified nurses and midwives. However, one nurse warned that the level of violence was unlikely to help with retention or recruitment. 'If you think you're going to be clobbered every shift, why would you stay?' she said. RCN general secretary and chief executive Professor Nicola Ranger said: 'Nursing staff not only go to work underpaid and undervalued but now face a rising tide of violence. It leads to both physical and mental scarring, lengthy time off, and sometimes staff never returning. You can't fix the health service when vital staff are too scared to even go into work.' 'Shocking' Levels of Abuse The 2024 NHS Staff Survey found that 14.38% of staff had experienced at least one incident of physical violence from patients, service users, relatives, or members of the public over the course of a year. A further 25.08% reported at least one incident of harassment, bullying, or abuse. 'Behind these shocking figures lies an ugly truth,' Ranger said. 'Dedicated and hard-working nursing staff face rising violent attacks because of systemic failures that are no fault of their own.' She urged the government to move beyond recording incidents and focus on reducing them. NHS Response NHS England said it was committed to supporting colleagues in violence prevention, security management, and other high-risk roles. It offers courses and programmes to help staff prevent and reduce the risk of violence and to support their wellbeing. 'Measures to keep staff safe day-to-day are crucial,' said Ranger. 'But the stark reality is that unless the government does something about lengthy waits, corridor care, and understaffed nursing teams, more nursing staff will become victims of this utterly abhorrent behaviour.'
Yahoo
5 hours ago
- Yahoo
I Got a $4,500 Full-Body MRI to Catch Hidden Health Risks—Here's What It Found
"Hearst Magazines and Yahoo may earn commission or revenue on some items through these links." I've always believed in being proactive about my health, but like most people, I usually only see a doctor when something feels wrong or if I'm overdue for an annual exam. That changed when I learned about the Prenuvo scan—a whole-body MRI designed to detect serious conditions like cancer, aneurysms, and degenerative diseases before symptoms appear. The idea of a non-invasive, radiation-free scan that could potentially catch issues early intrigued me. Still, I was skeptical. It's not a medically necessary procedure, is quite pricey (more on this later), and not widely available. Would it be just another wellness trend wrapped in high-tech marketing, or could it actually be the latest health breakthrough—or better yet, a life-saving health screening? Prenuvo has gained a lot of attention lately, especially after celebrities like Kim Kardashian and Kris Jenner publicly endorsed it, calling it a 'life-saving machine.' Though I don't have an endless health budget of a Hollywood elite, I was lucky enough to receive a complimentary Enhanced Screening. I'm 27 years old, generally healthy, and have no major concerns aside from some chronic neck pain and degenerative disc disease, of which I've already had imaging and treatment. Still, with a family history of cancer and a growing awareness that symptoms don't always show up until it's too late (I've worked at Prevention for years), the opportunity to really see what's going on inside my body excited me. Meet the experts: Daniel Durand, M.D., M.B.A., chief medical officer and president of Prenuvo Medical Group; Ken Berry, M.D., family physician and co-author of Common Sense Labs; and Mia Kazanjian, M.D., board-certified radiologist specializing in breast and body imaging The entire process, from booking the appointment to the scan itself to my post-scan consultation, was overall a positive experience. In this Prenuvo review, I'll walk through what the appointment was like, the cost, what my screening found, what medical experts think of a (non-medically-necessary) whole-body MRI, and ultimately, whether I think it was worth it. What is a whole-body MRI scan? An MRI (magnetic resonance imaging) is an imaging technique that 'uses protons, magnets, and radio frequency pulses' to create a detailed picture of the inside of the body, says Mia Kazanjian, M.D., board-certified radiologist specializing in breast and body imaging. 'It has no radiation, unlike CT scans and X-rays.' MRI is typically used on individual parts of the body, like the pelvis or the head, on an as-needed basis. Whole-body MRI, on the other hand, does exactly what it sounds like: It uses the same magnetic resonance imaging technology to take a picture of the whole body, which, at Prenuvo, takes about an hour. 'Typically, imaging is done in a very focused manner based on a specific question that another physician is asking,' says Daniel Durand, M.D., M.B.A., chief medical officer and president of Prenuvo Medical Group. 'What Prenuvo does is digitize the entire body. You can think of Prenuvo as a tech-enabled, direct-to-specialist care model. We're digitizing the human body with the most powerful tool, which is MRI, and then we're having a radiologist do a head-to-toe, on the inside, examination of the patient.' An important note about the limitations of whole-body MRI: 'Preunvo exists to layer on top of existing screenings. This is in addition to, not a replacement of, and we have always said that,' Dr. Durand explains. 'The idea is that if you have a primary care doctor and you're doing your routine screenings, Prenuvo supercharges all that. Our belief is that whole body MRI, plus existing screenings, offers a level of diagnostic accuracy and reassurance that goes beyond anything that came before.' Ken Berry, M.D., family physician and co-author of Common Sense Labs, agrees that right now, whole-body MRI doesn't replace guideline-based screening (like colonoscopies or mammograms). 'It's a supplemental tool, not a substitute,' he says. 'Whole-body MRI can detect early cancers, aneurysms, and neurological issues, but it's not always better than traditional screening.' Dr. Berry says if you have a strong family history of cancer, a genetic risk, or a history of serious illness, it may be worth considering, but he's cautious about recommending it for the average healthy adult. My experience I underwent the Enhanced Screening, the most thorough evaluation Prenuvo offers. This included a whole-body MRI, which covered the brain, chest, abdomen, pelvis, spine, and major vasculature, free from radiation or contrast; a body composition analysis and advanced brain health assessment (taken during the MRI); and a comprehensive bloodwork panel. The actual experience of getting the MRI was fairly painless. Before the procedure, I was sent a fairly lengthy survey of my medical history to determine whether it was safe for me to undergo the scan and ascertain any health concerns I may have. I also took Prenuvo up on the offer to take a light sedative before heading in to ease any anxiety or claustrophobia to make the experience more comfortable. Then, I arrived at the Manhattan location ready to sit still in an MRI machine for just about an hour. Surprisingly, that hour went by pretty quickly. They gave me the option to choose a show or movie to watch on Netflix during the scan (I decided on Ginny and Georgia), which helped move things along mentally. Before I knew it, I was heading home, where a nurse from a concierge service employed by Prenuvo later drew my blood for the bloodwork portion. About two weeks after my scan, Prenuvo reached out to schedule my post-scan consultation with Vikash Modi, M.D., senior medical director of preventative medicine at Prenuvo. My virtual consultation with Dr. Modi lasted about 45 minutes, and he walked me through my scan, all of my bloodwork, my body composition analysis, and brain health assessment. He also answered any questions I had and gave me a few suggestions regarding my health moving forward. The results About a week prior to officially receiving my results, I got a call from Dr. Modi to discuss one potentially urgent finding from my bloodwork. My blood panel showed that I had a glucose level of 38, which can be very dangerous. We discussed that this was likely due to fasting all day before the bloodwork (which I had scheduled for 3:00 p.m.), as my A1c (a blood test that measures the average blood glucose from the last two-to-three months) was normal. But I was advised to repeat bloodwork with my primary care physician as a precaution. Dr. Modi then reassured me that there were no other major findings on my scan or my bloodwork, but that we would discuss it further at my official consultation. Fast forward to that appointment: Dr. Modi thoroughly went over my results, starting with my bloodwork, then my scan, the brain health assessment, and finally body composition analysis. Thankfully, my bloodwork showed I'm in good health, which was reassuring since the blood panel was very comprehensive. However, as Dr. Berry explains, 'comprehensive' doesn't always mean 'useful.' While it did give me a lot of peace of mind, Dr. Berry says that 'although most doctors don't order enough bloodwork, as I discuss in Common Sense Labs, it is also true that ordering too much labwork creates a new set of problems,' including confusion and the potential for reacting when it may not be medically needed. My scan, however, did show one moderate finding, four minor findings, and one informational finding. In addition to my virtual consultation with Dr. Modi, I was able to visit the Prenuvo online dashboard, which features an interactive and informative report. FLAIR hyperintense lesion, right frontal lobe. This sounds scary, but it was actually one of my 'minor findings.' On the Prenuvo app, it was labeled a 'small vessel ischemia,' which is a term describing the changes that occur by disrupting the small blood vessels in the brain, and is often a sign of poor cardiovascular health. However, Dr. Modi reassured me that the online interface is always being updated, and that the patient-facing side doesn't always align perfectly with the clinical interpretation. In my case, it may have been caused by head injuries I sustained during my time as a cheerleader. I had no signs of white matter disease, aneurysm, growths, or masses, and overall, my brain volume was very healthy. Scoliosis. I knew about this 'minor finding' previously from a recent X-ray. I have 'mild' scoliosis in my lumbar spine. Spondyloarthropathy of the cervical and thoracic spine. These are two 'minor findings' I was also aware of from previous imaging. Spondyloarthropathy is the medical term for degenerative arthritis. I have long struggled with neck and upper back pain, and have been undergoing treatment (mainly physical therapy) for a few months now. Discussing these findings with Dr. Modi reassured me that I'm doing everything right in my current treatment plan. Hemorrhagic ovarian cysts. This was my only 'moderate finding;' one that I was not previously aware of. While I'm not experiencing any symptoms due to these benign, fluid-filled ovarian cysts, I'm glad I know about them now in case they ever do rupture or cause any complications. While Dr. Modi didn't officially diagnose me, he suggested these may be a sign of polycystic ovary syndrome (PCOS) due to my semi-irregular menstrual cycle, history of acne, and recent struggle to lose weight. He suggested some supplements I might consider taking and made me aware of the typical treatment and medications doctors usually prescribe, should I ever seek that. Dense breast tissue. The scan also revealed that I have dense breast tissue, which means I have more glandular tissue (as opposed to fat tissue) in my breasts, which may make it more difficult to screen for breast cancer with a typical mammogram. I was already aware of this, as I have a history of breast cysts, which is why I get regular ultrasounds. I was a little surprised the Prenuvo MRI did not pick these up, but Dr. Modi explained that the threshold for breast cysts at Prenuvo is around five millimeters. So, anything smaller than that (which my cysts likely are) would not be picked up by the MRI. 'It's a see-a-lot test, not a see-everything test,' Dr. Modi said. Following my bloodwork and MRI scan, Dr. Modi went over my brain health assessment, which measured the volume of every structure within the brain. Thankfully, all of those structures in my brain fell into normal ranges. Finally, we discussed my body composition analysis, which showed data for total muscle mass, subcutaneous fat, and visceral fat. This test is very useful, says Dr. Berry. 'Knowing visceral fat and muscle mass is much better than just looking at Body Mass Index (BMI),' he explains. (Note: Prevention no longer uses BMI as a measurement of health.) Again, thankfully, Dr. Modi ensured that for the most part, my analysis falls into 'normal' ranges for my age and sex, except that I actually have a bit more muscle mass than average, which is a good thing. This test was really interesting to look at because it included a very detailed analysis of hip and lower body muscle volume, as well as a symmetry analysis. None of this was major, but it did confirm a few things I suspected about the way my body works and moves. Are whole-body MRIs the future of preventative healthcare? It's difficult to say. 'The essence of what Prenuvo does, and I think it's poorly understood, is that we don't by ourselves prevent anything. But, we can absolutely help a patient choose their own destiny and pursue the right preventative strategies, because we can show them what's going on in them, as opposed to just general advice,' Dr. Durand explains. However, as Dr. Durand and the Prenuvo website state, there are limitations. I asked Dr. Berry, an unaffiliated family physician, whether whole-body MRIs can meaningfully replace or reduce the need for standard individualized screenings based on modern-day recommendations. He said, not right now. It doesn't replace guideline-based screening. 'It can't do what a colonoscopy or mammogram does, and it doesn't offer the same level of detail. It's a supplemental tool, not a substitute,' Dr. Berry explained. 'If it could fully replace traditional tests, I'd be on board, but the evidence just isn't there yet.' Dr. Kazanjian adds that whole-body MRI 'tends to be more effective at detecting lesions in the kidneys, pancreas, lymph nodes, and bones, among some others,' but that the screening's ability to characterize them as benign or malignant may be limited. She adds that whole-body MRI does not effectively screen for some of the most common cancers, including skin cancer, breast cancer, colon cancer, lung cancer, and cervical cancer. And while there will certainly be 'findings of import on these exams,' including brain aneurysms, evidence of autoimmune diseases, metabolic syndromes, and small cancers, among others, Dr. Kazanjian explains, it's impossible to say whether whole-body MRI truly leads to improved health outcomes or whether those results would be uncovered via traditional screening methods. There's also the aspect of incidental or benign findings, which are clinically insignificant (meaning they cause no harm), but create a type of 'scanxiety,' or anxiety felt by patients pre- and post-scan, Dr. Kazanjian says. The cost and impact My Enhanced Screening at the Manhattan location has a cost of $4,500, but it varies based on the exact scan you choose, and sometimes, the location. There are less costly options, like the regular whole-body MRI ($2,500) or the torso-only MRI ($999). Prenuvo also offers its Warriors Program, which offers discounted services to first responders, military members, and veterans. While some doctors, like Dr. Kazanjian, do recommend whole-body MRI for high-risk individuals (like those with a strong family history of cancer and/or genetic mutations) and for patients with cancers such as multiple myeloma and lymphoma, it is generally not recommended for the general population, she explains. 'I do not think this is cost-effective for the population, particularly given the large percentage of false positives with the necessity for costly follow-ups,' says Dr. Kazanjian. 'I say this even if the initial service were cost-free.' Dr. Durand also acknowledges that not everybody can afford the Prenuvo model of healthcare today. That's why he says Prenuvo is working every day to harness the powers of artificial intelligence to become more efficient, which will allow them to bring prices down long-term. In terms of side effects, MRI, including whole-body MRI, is mostly safe. The 'scanxiety' and inconsequential benign findings that Dr. Kazanjian points out are the main downsides. As with any MRI, it's important to tell your doctor and radiologist if you have any metal or electrical implants in your body (such as pacemakers and infusion pumps), as the magnetic field generated by the MRI machine can pose a hazard to patients in these cases. The detailed questionnaire sent over by the Prenuvo team before your appointment covers these in length, and your radiologist will also inquire about any metal in or on your body before your scan. The bottom line 'These scans have potential and may help in the future, but right now they're best for people with high risk or specific concerns or a lot of disposable income,' Dr. Berry explains. 'For the average person, they often create more questions than answers. Too much testing can lead to fear, cost, and harm, especially when there's no clear benefit. Prevention and early detection are very important, but it has to be reasonable and relevant, not just expensive.' Reflecting on my experience with the whole-body MRI at Prenuvo, I feel fortunate to have had access to such advanced technology. The scan provided valuable insights into my body's health that I wouldn't have otherwise had. However, while I wouldn't hesitate to recommend it to those who have the resources and are curious about their health, I do believe it's important to approach it with a balanced perspective. From a cost-benefit standpoint, it's not yet a universally essential tool in healthcare, and its value largely depends on individual circumstances and priorities. 'The best advice I can give to the people reading this is the advice I live by and the advice I give my patients. This is the same advice I give my mother—and I love my mother. It's to live a healthy life—keep a healthy weight, eat whole grains and vegetables and lean protein, exercise regularly, sleep seven hours a night, avoid tobacco and alcohol, and get annual checkups, recommended screenings, and vaccines with your doctor,' Dr. Kazanjian says. 'Prevention is the best medicine.' You Might Also Like Can Apple Cider Vinegar Lead to Weight Loss? Bobbi Brown Shares Her Top Face-Transforming Makeup Tips for Women Over 50
Yahoo
8 hours ago
- Yahoo
Nurses punched, spat at and threatened with weapons over A&E wait times
Nurses are being punched, spat at and threatened with weapons by patients who are not prone to violence but are becoming angry after long waits in A&E.
