Latest news with #heartdefect
The National
15-07-2025
- Health
- The National
'I have my life back': Sudanese teenager recovering after heart operation in Dubai
A Sudanese teenager has thanked doctors in Dubai for "helping me get my life back" after he underwent a critical operation for a heart defect that had gone undetected since birth. UAE resident Mazin Muntassir Hassan, 14, was found to have a congenital condition that could have been deadly if left untreated. The issue was diagnosed after he was taken to Aster Hospital Mankhool in Dubai recently with persistent fatigue and elevated blood pressure. He had also blacked out. His symptoms raised the alarm among the medical team and led to further tests being carried out. Mazin was found to have coarctation of the aorta, in which the major artery carrying blood from the heart to the body is narrowed. While the condition is not uncommon, it occurs in about one in every 2,900 births, a diagnosis in a teenage patient is extremely rare. Mazin was under the care of Dr Naveed Ahmed, head of cardiology at Aster hospitals and consultant interventional cardiologist at Aster Hospital Mankhool. "Coarctation of the aorta is typically diagnosed during infancy or early childhood," Dr Ahmed said. "It's extremely rare to catch it this late and had it gone unnoticed for a few more years, it could have led to permanent hypertension, heart failure, or even stroke. While the procedure itself was technically smooth due to precise pre-procedural planning based on CT imaging, the true complexity of this case lies in the delayed diagnosis. "Identifying and successfully treating the condition in adolescence after years of being missed made it both clinically challenging and unique.' Instead of open-heart surgery, the cardiology team opted for a minimally invasive coarctoplasty with stent placement, performed through the femoral artery. The procedure involved the insertion of a balloon-mounted stent to open the narrowed section of the aorta. The approach helps to reduce the amount of time a patients needs to remain in hospital and improves their recovery time. Mazin is expected to be able to resume full physical activity within weeks. New lease of life Mazin's mother and brother, who accompanied him during treatment, expressed their thanks to Dr Ahmed and his team for their care. The teenager is now expected to lead a normal life, although he will require routine follow-ups. 'Before the treatment, I felt tired all the time and couldn't play or do normal things like other kids," he said. "Now I feel healthy and strong again. I'm so grateful to Dr Naveed and the team at Aster Hospital Mankhool for helping me get my life back.'
ABC News
02-07-2025
- Health
- ABC News
Westmead Hospital patient waits more than 200 days for life-saving heart surgery
For more than seven months, Joshua Maxwell woke each morning wondering if this was the day he would die. The 32-year-old writer and playwright from the NSW Central Coast was diagnosed with a congenital heart defect as a child, which only deteriorated with age. In May 2024, he was booked in for an elective open-heart surgery at Sydney's Westmead Hospital after his body started rejecting medication needed to keep him stroke-free. Mr Maxwell's surgeon classified him as a category two patient, meaning his surgery should have taken place within 90 days. His surgeon hoped it would happen sooner because of the risk of what he described as a "lights out" stroke. "His exact words were, 'I want you on and off my table within 30 days'. He said 'Westmead might take a bit, so let's say 45,'" Mr Maxwell said. As the days and weeks ticked by, Mr Maxwell, who has autism, ADHD and a neurological condition, prepared for the worst. He left his job, drafted a will, said goodbye to his family, and wrote letters to friends. He even planned a funeral and booked a celebrant. "I was in such a bad mental health state that I figured if I have everything planned, it won't bother my family if anything happens, apart from losing a loved one," he said. Mr Maxwell said he repeatedly called the hospital, pleading for a surgery date. "It was always a 'not yet, not yet, there's people in front of you'. It got to the point where I felt like I was just sitting in limbo, waiting by a phone for a phone call that just wasn't coming," he said. In desperation, he reached out to his surgeon's office, asking if anything could be done. "Unfortunately, this is the public system and is out of our hands. If you do notice any deterioration in your symptoms, please go to your nearest emergency department and let them know that you are on [your surgeon's] waitlist," his surgeon's office replied in an email. The Western Sydney Local Health District (WSLHD), which is responsible for Westmead Hospital, declined the ABC's request for an interview. In November 2024, six months after he was placed on the waitlist and with no clear idea of when his surgery would happen, Mr Maxwell wrote a heartfelt letter to his local MP, David Harris, pleading for help. His health was deteriorating, and he was concerned that without the procedure soon, he might not live for much longer. "Each day is a tightrope walk of symptoms and emotion while I wait for my phone to ring. My family and friends, and work are suffering because I have no control over anything," he wrote in his letter. "I am deeply concerned about what might happen if I become critically unwell and surgery cannot be scheduled in time. On January 23 this year, Mr Maxwell was finally booked in for surgery — 210 days after he was first placed on the waitlist. He believes his letter to Mr Harris, who he was told discussed the issue with NSW Health Minister Ryan Park, was key to finally securing the date. He isn't sure whether having his procedure performed within the recommended 90-day window would have prevented health complications, but he said the damage to his mental health had been overwhelming. "They were traumatic, they were never-ending, they were filled with very little joy and positivity. "It felt a lot of the time like I was tied to a set of train tracks, and I just had to hope that the one I was tied to wasn't the one the train was barrelling down." Mr Maxwell said he had never been given an explanation as to why he had to wait so long for his operation. Surgery bookings and schedules are managed by hospital staff who do not always have clinical backgrounds. Mr Maxwell is sharing his experience in the wake of allegations of excessive wait times in cancer screening procedures at Westmead Hospital. Sources have told the ABC that the WSLHD's CEO, Graeme Loy, was asked to step down from his role by the NSW Secretary of Health, Susan Pearce, last week, ahead of a vote of no confidence by medical staff at Westmead Hospital. NSW Health is conducting an independent review into cancer wait times, but the investigation has no set timeline. Jenny King, the deputy chair of the Westmead Medical Staff Council, said other departments at the public hospital were impacted by lengthy wait times. "These things happen because there are inadequate staff to deal with the administrative load, the paperwork and patients may be forgotten," she said. She met with Mr Park on Wednesday to discuss the growing crisis but said more funding for the Western Sydney region was desperately needed. "It's an area that has a lot of health problems. We aren't staffed, we aren't funded, we are not resourced for the demands of our community," she said. In a statement, a WSLHD spokesperson sincerely apologised to Mr Maxwell "for the delay in receiving his surgery". "We understand how challenging it can be when patients wait longer than they expect for their procedure," the spokesperson said. "We acknowledge that there were shortcomings with our communication to Joshua about his surgery." The spokesperson said, as of June this year, there were no overdue patients requiring heart surgery. Mr Maxwell has another two months of recovery before he can return to work, but the delay in his surgery has also affected the ongoing treatment of his neurological condition. He's speaking out because he's concerned other patients attending Westmead Hospital could die while waiting for surgery. "I just don't know how I'm going to learn how to trust that system that was meant to protect me and make me better again," he said.
The Sun
17-06-2025
- Health
- The Sun
Our son, 12, cried out ‘mum, help' before he suddenly died – he'd gone to ‘rest in bed' just hours before
A SCHOOLBOY, who told his parents he was going to "rest in bed" after suffering with a cough and temperature, suddenly died "out of nowhere". Tomas Remeikis, 12, had been diagnosed with pulmonary hypertension as a child after doctors discovered a hole in his heart. Pulmonary hypertension is a condition that affects the blood vessels in the lungs, and in children can stem from various underlying conditions, including congenital heart defects, lung diseases, and genetic factors. But despite his diagnosis, Tomas lived a healthy life for many years - cycling to school every day and attending taekwondo classes twice a week. It wasn't until May 26 this year that Tomas, who was born in Manchester but moved to Southport two years ago, fell ill. Despite being rushed to hospital, he tragically died. When Tomas was a young child he often experienced shortness of breath and tiredness - two symptoms of pulmonary hypertension. His dad, Andrius Remeikis, told Liverpool Echo: "He was just ill all the time but we thought it was chest infections. Then his mum went to see her parents when he was about two and half, three years old, and he was walking with his granddad on a little scooter. "Tomas used to stop to catch breath and his granddad became a bit suspicious. He said, he shouldn't be so tired." Pulmonary hypertension can lead to serious complications like heart failure, which can be fatal. When Tomas' hole in his heart was discovered, he underwent urgent surgery, which was successful. He was then required to take medication every day and also received regular checkups at Great Ormond Street Hospital in London. Understanding blood clots Following the surgery, once or twice a year Tomas would feel dizzy. But nothing would show up in tests and he otherwise appeared stable. Around a week before his death, Tomas started feeling poorly with a cough and a temperature, but soon felt better. However, he fell ill again on the Bank Holiday Monday in May. Andrius said: "I had just made breakfast and he wasn't feeling well. I asked the same questions about his lungs and heart but he just had a cough. "He said, I'll go rest in bed for a bit. In the afternoon he got up again and I made him some tea. I asked how he was feeling and he said, maybe a bit better. "Then it just all happened all of a sudden. I was with my wife and we decided to go to the hospital. She started getting his trousers out and then she shouted at me, saying, his lips are getting blue. He shouted, 'mum, help' and we called the ambulance. Then he lost consciousness." An ambulance arrived to take Tomas to hospital, but his family aren't exactly sure when or why he died. While a post-mortem has said it looks like his heart failed, the cause of death will be determined by an inquest. Tomas' family has asked for donations to the Pulmonary Hypertension Association, who supported him throughout his life. His heart will be donated to them for medical research. Andrius said: "Tomas was kind, friendly, loving and outgoing. He really got along with everyone that he came in contact with. Anyone who spent time with him loved him." Warning signs of pulmonary hypertension PULMONARY hypertension is high blood pressure in the blood vessels that supply the lungs (pulmonary arteries). It's a serious condition that can damage the right side of the heart. The changes in the pulmonary arteries that lead to pulmonary hypertension can be caused by: various conditions that cause problems with the smaller branches of the pulmonary arteries (PAH) conditions that affect the left side of the heart lung diseases or a shortage of oxygen in the body (hypoxia) blood clots that cause narrowing or a blockage in the pulmonary arteries Symptoms include: shortness of breath tiredness feeling faint or dizzy chest pain (angina) a racing heartbeat (palpitations) swelling (oedema) in the legs, ankles, feet or tummy (abdomen) If you have any symptoms you should see a GP. If you get sudden chest pain that does not stop after a few minutes, or you have heart palpitations with chest pain, shortness of breath or feeling faint call 999 or go to A&E. These could be a sign of another condition such as a blood clot in your lungs or a serious heart problem. Source: NHS
The Independent
29-05-2025
- General
- The Independent
‘Unacceptable' delayed scan could have prevented baby's death, inquest hears
A surgeon has said there were 'unacceptable' delays in obtaining a scan that could have saved the life of a one-year-old boy. Archie Squire died from heart failure in the early hours of November 23 2023, after successive cardiac arrests, days after his first birthday. He was suffering from a rare, undiagnosed heart defect in which the heart's lower half is reversed, an inquest heard. On Thursday, paediatric cardiac surgeon Professor David Anderson was called to give independent medical evidence at Kent and Medway Coroner's Court in Maidstone. He told the court the delay after Archie was referred for an echocardiogram by a GP on October 6 was 'just too long'. The referral to Queen Elizabeth the Queen Mother (QEQM) Hospital in Margate, Kent, did not result in an echo scan taking place before Archie died. Prof Anderson, who holds honorary consultant positions in several countries, said: 'If I showed this audience an echo of a heart pumping normally and an echo of a heart not pumping normally, it is absolutely barn-door obvious. 'An echo in advance of his final admission would have enabled the management to be appropriate for his situation.' While the scan would not guarantee an immediate diagnosis, it would have shown 'poor function' of Archie's heart, the inquest heard. A report prepared by Prof Anderson said: 'If his diagnosis had been correctly made, he almost certainly would not have died when he did.' It added that 'the delay in obtaining an echo was unacceptable'. He told the coroner: 'I would hope that it would have prevented him from collapsing into the situation from which he could not be resuscitated. 'We would not have been advising his family that he would have lived a long and happy life and he would have died at an old age, we would have been very, very guarded with our prognosis.' Archie is thought to have suffered from undiagnosed congenitally corrected transposition of the great arteries (CCTGA), which has been referenced in his medical cause of death, the inquest heard. Most practitioners will go through their entire working lives without seeing or having to treat CCTGA, Prof Anderson said. 'It's very rare indeed,' he added. Archie did not receive an echocardiogram during the month and a half after being referred by a GP to QEQM, or during his final hospital admission. Prof Anderson said: 'If he had an echo on November 21, which I'm certain would have shown very poor function and I suspect such severe poor function that he would have been referred to Evelina (London Children's Hospital). 'I can only imagine that the function was really pretty awful by this stage and not something that a local hospital would take on to manage.' It is unusual for someone with CCTGA to go into cardiac failure so early in their life, the inquest heard. According to the Adult Congenital Heart Association, just 0.5-1% of babies born with heart defects have CCTGA. The inquest is expected to conclude on Friday.
ABC News
24-05-2025
- Health
- ABC News
The high-tech ECMO machine saving lives and giving families a chance to make memories
Warning: This story contains content that might upset some readers. Five-week-old Sidney Mahony lies in his mother Ashleigh's arms on a secluded balcony at the Queensland Children's Hospital on a summer's day in February. It's 3pm and time to say goodbye — way too soon after their first hello. Dad Lonni is here and Sidney's older sister Tully, then still a toddler. Other family and close friends have also arrived. Some of the hospital team who have cared for Sidney since his birth with a rare and severe heart defect are among the 20 or so people who have made their way to the hospital's seventh floor balcony, to support his family as he takes his final breaths. "It was a beautiful day," Lonni recalls, three years later. "Brisbane couldn't have turned it on any more." For most of his life, Sidney was attached to a machine known as ECMO — an acronym for extra-corporeal membrane oxygenation, a high-tech heart and lung machine. At the end, it's what allowed his parents some precious extra time to make memories with their baby boy. In other cases, such as 15-year-old Sunshine Coast teenager Byron Blackmore, it saved his life. Sidney and Byron are among more than 270 children who have been treated with ECMO since the Queensland Children's Hospital opened in 2014. ECMO patients are so critically ill, only about two-thirds survive. The hospital's three heart surgeons are the only medical specialists in the state qualified to place children on the machine, which has become a treatment of last resort. Queensland Children's Hospital director of cardiac surgery Nelson Alphonso says intensive care specialists will typically call on heart surgeons to place a child on ECMO in cases of severe heart or lung failure, or a combination of both, when all else has failed. "They only call us when the patient is really at death's door, to come and intervene," Dr Alphonso says. Occasionally, they'll move the baby to the operating theatre to connect them to the ECMO machine. But in most cases, there's no time. "The children are too sick to be moved and so we will place them on ECMO where they are," Dr Alphonso explains. "In some instances, we have to open the chest in the paediatric intensive care unit (PICU) and connect the baby to the ECMO machine. "Sometimes we put patients on when they're in a cardiac arrest situation, when they're undergoing chest compressions and being resuscitated." Sidney was about a week old in early January 2022, when he was first put on ECMO after being born with hypoplastic left heart syndrome, also known as "half a heart" because the left side of the heart is severely underdeveloped. He was also born with only one kidney. Towards the end of open-heart surgery to re-plumb his heart's right chamber — allowing it to take over completely from the underdeveloped left side — he suffered an unexplained leak in a key heart valve. Dr Alphonso had to repair the valve on the operating table. When Ashleigh and Lonni finally saw their baby after the operation, he was connected to ECMO — a machine several times his size. "I didn't really know what to expect," Ashleigh says. "There was a lot of blood … just seeing blood going through tubes, an open chest. "I know that they explain it to you, but when you see it in person it's really confronting — like this is your body working for you outside your body, keeping you alive. In simple terms, ECMO takes over the work of the heart and the lungs. It siphons blood out of the child, removes carbon dioxide and oxygenates it before sending it back to the body, giving the patient's heart and lungs time to rest and recover. Having their newborn attached to so many tubes and machines meant bonding was far from instinctual. Picking him up and holding him in their arms was impossible. But with help from hospital PICU staff, they were able to give him a bed bath, using wipes to wash tiny body, and change his nappy. "We wanted to treat it — the situation — the same as we would if we had Sid at home," Lonni says. "We weren't going to just be hands-off parents. That's not our approach. "We wanted to feel useful in some way." Ashleigh gets emotional as she speaks about the simple task of wiping Sidney's eyes when he could open them. "I found that was the best," she says. Tully, then aged 15 months, also spent time at the hospital most days to be with her brother. Sidney was eventually taken off ECMO and doctors returned him to the operating theatre to close his chest. "We thought the worst was over," Dr Alphonso says. But the next day Sidney's heart stopped. "He went into cardiac arrest in front of me," Ashleigh recalls, her voice trembling with emotion. Sidney was reconnected to the ECMO machine to give him every chance of recovering. But when his other organs started failing and his hands and feet went black, doctors met with Ashleigh and Lonni, who were already preparing themselves to farewell Sid. "At this point, you have to recognise in a way you're not prolonging life, but you're prolonging death," Dr Alphonso says. "Since death is inevitable, we usually place the baby in the parents' arms and then we stop the machine. You grow close to the family during all of these journeys. "It does take its toll on everyone." The hospital gave Ashleigh and Lonni time with Sidney to make memories before the ECMO machine was switched off. "We got a couple of extra days where we just got to lay with him in a big hospital bed, and not just his own, to actually cuddle our child and make it our space as well," Lonni says. Ashleigh wipes away tears as she recalls those last days with her son. "They really let us do as much as we possibly could," she says. "There were no limits. All the walls were down. It was like celebrating our son. We got really encouraged … to make memories and we definitely did." Like Sidney, about half of the children treated with ECMO at the Queensland Children's Hospital (QCH) have severe heart disease. Intensive care specialist Sarfaraz Rahiman, the hospital's ECMO service medical lead, says other common reasons children use the heart-lung machine include severe pneumonia and sepsis, a life-threatening response to an infection. "ECMO has dramatically revolutionised the way we look after children with severe heart and lung failure," Dr Rahiman says. "It's intensive care in the truest sense. It's one of the most complex and invasive treatments that we provide." He says children can be placed on ECMO for anywhere from a few days to more than a month. "We've had kids on ECMO for up to six weeks and some of them have done well after," he says. Dr Rahiman is also deputy director of the QCH's PICU, a large team of more than 300 people, including doctors, nurses and allied health workers, who work together to care for the state's sickest children. He says the unit has provided about 1.8 million hours of intensive care to more than 18,000 patients in the past 10 years. About 1.5 per cent of those were treated with ECMO. Maleny State High School student Byron Blackmore has no memory of his time on ECMO last year, but is grateful for the treatment that saved his life. "Without it, I wouldn't be here," the 15-year-old says. Byron bears a scar from neck to naval after two open-heart surgeries at the QCH last year for a genetic heart condition, known as hypertrophic obstructive cardiomyopathy, which causes the heart muscle to thicken. Although Dr Alphonso "cut out a lot of the muscle" in January last year, Byron required more surgery in June. He came out of the second operation critically ill and on ECMO. His mum Jemma Mays described the situation as "terrifying". "It was a pretty scary time for all of us," she says. "No one wants to see their child like that." When she asked Dr Alphonso whether Byron could die, he responded "he's a very, very sick boy". Byron was unconscious and unable to speak to his family for two weeks, but they played Broncos games on television and talked him through what was going on. "It was so hard not being able to have him talk to us," Jemma says. "We still spoke to him." His grandfather also sent a video of him singing Bob Marley's Three Little Birds — which includes the line "Every Little Thing's Gonna Be Alright" — that was played to the teenager in PICU. Byron's older brother Hayden, 21, drove to and from the South Brisbane hospital every second day from the Sunshine Coast to spend time with him. "He would just spend hours with Byron, holding his hand, helping the nurses reposition him, just loving him," Jemma says. Byron was weaned off ECMO and after 28 days in hospital was finally allowed home. He spent months recovering from the effects of being on the machine. "They said it would take about six months to recover from," Jemma says. "And because Byron has mild cerebral palsy as well, there was a lot of flow on effects he had with that. "He had tremors in his hands, and he's had to have a lot of physio. It's been such a big thing." But Byron is alive and asked how he's feeling, he says "amazing". Two weeks after Sidney Mahony's death, his family's house at Oxley, in Brisbane's south, flooded during the 2022 deluge. "You're dealing with being in such flight or fight and shock of what's happened that when you lose your belongings, it doesn't feel like anything," Ashleigh says. "The grieving of the house was almost non-existent because Sid died." As they dealt with their trauma, it was Tully who helped them through their heartache. "Tully really saved us," Ashleigh says. "She was always the joy in the room. "I remember at the time being like: 'I'll be able to thank you when you're older for helping me.' She's been through a lot. She's very emotionally aware and a very caring girl." And then a year ago, Harlan was born. Nothing can ever replace Sidney, but Harlan's entry into the world has brought some healing. "A lot of my emotions and a lot of my grief were resolved in that moment of having to hold Harlan in my arms," Lonni says.
