Latest news with #congenitalheartdefect
The Sun
26-06-2025
- Health
- The Sun
Our miracle baby girl died in my arms after doctors disagreed with us – we don't want other parents to face our agony
A COUPLE have shared how their miracle baby tragically died after she was sent home from hospital despite their objections. Klaire Carroll, 37, and Cassidy O'Connell, 26, worked overtime for years to afford IVF. 7 7 They were over the moon when they found out their efforts had paid off and were expecting a baby girl. But the parents' joy was soon dimmed when a 20-week scan revealed their tot had a congenital heart defect, tethered spine and bowel condition. Klaire and Cassidy were given the option of ending the pregnancy, palliative care or multiple surgeries – they chose the third one. Cassidy gave birth to Harlow Maeve Carroll-O'Connell on January 30 this year via C-section with Klaire by her side, at St Michael's Hospital in Bristol. The tot spent the next few months in and out of hospital due to breathing difficulties, poor feeding and weight gain issues. Cassidy, from Stroud in Gloucestershire, said: 'Harlow was treated for sepsis, meningitis, everything – but her infection markers were still high. 'They [the doctors] ran every test they could and couldn't find the cause. 'They decided to discharge her and we argued with the consultant – we knew something was wrong and she needed to stay in hospital. 'We are sharing our story to help other parents and encourage them to always advocate for their kids if they gut says something is amiss.' In May, little Harlow's oxygen levels dropped significantly and tests revealed she had a life-threatening bacterial infection affecting her heart. Mum shares heartbreaking photo of baby boy fighting for life as a warning - after she found him coughing and drooling She passed away on May 22, in her parents' arms. A post mortem wasn't able to ascertain Harlow's cause of death. The couple have reportedly been told they may have to wait up to 18 months to get a detailed report. A GoFundMe page has since been set up to help the parents with funeral and memorial costs – which has already reached £3,000 of its £3,500 goal. 7 7 7 'We honestly cant believe how much support we have received from everyone,' Cassidy said. 'It's helped us immensely with being able to fund the send off our girl deserves. 'What we are going through is unimaginable, no one deserves to lose a child – but the love we are receiving is helping us to get through each day. Little Harlow spent the first few weeks of her life in hospital. She came home briefly, only to be rushed back in several times due to breathing difficulties, poor feeding and weight gain issues. She underwent open-heart surgery – a BT shunt procedure that lasted around seven hours - on 31 March, with the aim of improving blood flow to her lungs. Congenital heart disease is a general term for a range of birth defects that affect the normal way the heart works. The term "congenital" means the condition is present from birth. Congenital heart disease is one of the most common types of birth defect, affecting almost one in 100 babies born in the UK. In most cases, no obvious cause of congenital heart disease is identified. However, some things are known to increase the risk of the condition, including: Down's syndrome – a genetic disorder that affects a baby's normal physical development and causes learning difficulties The mother having certain infections, such as rubella, during pregnancy The mother taking certain types of medicine during pregnancy, including statins and some acne medicines The mother smoking or drinking alcohol during pregnancy The mother having poorly controlled type 1 diabetes or type 2 diabetes other chromosome defects, where genes may be altered from normal and can be inherited Congenital heart disease can have a number of symptoms, particularly in babies and children, including: Rapid heartbeat Rapid breathing Swelling of the legs, tummy or around the eyes Extreme tiredness and fatigue A blue tinge to the skin or lips tiredness and rapid breathing when a baby is feeding These problems are sometimes noticeable soon after birth, although mild defects may not cause any problems until later in life. Klaire said: 'Harlow almost didn't make it through surgery. 'She fought and we just sat by her side, talking to her constantly and praying she would make it through. 'Things seemed to be heading in the right direction. 'They slowly lowered her sedation and she started moving her hands and feet, while trying to open her eyes. 'It was incredible – it was the best thing ever because we honestly thought we were going to lose her. 'So to see her wiggling her little toes – we were in floods of tears.' Harlow was a cheeky and happy girl. We're really proud of the strength and resilience she showed during her short life Claire After surviving her surgery, Harlow was once again sent home with her family on 28 April. Klaire and Cassidy, who build electronics for work, tried to create some normal memories as a family. Cassidy said: 'At this point, she had spent more than three-quarters of her life in hospital. 'We wanted to try and be a normal family. 'We took her to the aquarium with our families and she absolutely loved it. 'Watching her look around and take everything in was just so lovely. 'It's one of our favourite, treasured memories.' Devastating loss By early May, Harlow's oxygen levels had dropped significantly. She was blue-lighted to hospital where doctors found a shadow near her heart – it was endocarditis, a life-threatening bacterial infection of the heart's inner lining. Medics had trouble inserting cannulas to give Harlow the antibiotics she needed and the tiny tot developed blood clots in her arm. On 22 May, she was taken into surgery again to fit a new PICC line, a tube used to deliver medications and other treatments to veins near the heart. According to her parents, Harlow was screaming and her skin colour was abnormal. Klaire said: 'She went into cardiac arrest and died in my arms. 'They did CPR to try and bring her back but there was nothing they could do. 'Cass just spent the whole time screaming, 'I can't lose my baby.'' Living in an empty home filled with Harlow's things, the couple say the pain is like nothing they've ever known. Klaire said: 'Harlow was a cheeky and happy girl. 'We're really proud of the strength and resilience she showed during her short life. 'She was a real fighter and left a lasting impression on everyone she met.' 'She had been through such a tough journey but every single step of the way that girl just fought through everything with a smile on her face whenever she could." Jam Press approached University Hospital Bristol & Weston NHS Foundation Trust for comment. Dr Rebecca Maxwell, chief medical officer at University Hospitals Bristol and Weston NHS Foundation Trust said: 'Our heartfelt condolences go out to Harlow's family during this difficult time. 'We remain in close contact with the family to address their concerns and provide ongoing support." You can donate to Klaire and Cassidy's GoFundMe page here. Any leftover funds will be donated to The Grand Appeal and Heart Heroes, charities that supported the parents through their journey. 7
Yahoo
15-06-2025
- Health
- Yahoo
Baby girl whose parents were told was 'perfectly healthy' needed open-heart surgery
A 'perfectly healthy' County Durham baby was rushed to hospital for open-heart surgery due to a congenital heart defect that was not detected on ultrasounds. Baby Arabella was just 12-days-old when she was taken to Newcastle's Freeman Hospital after her parents, Lauren Robinson and Nathan Bridger, noticed a blue tint to her skin. Lauren, of Willington, told The Northern Echo: "The blue tint developed after a few days. Her hands and feet were always a sort of purple colour too. "After she was born, doctors described Bella as 'perfectly healthy'. We'd seen a few midwives, and I had mentioned about Bella's colour, and they said it was quite normal for newborns. "But when Bella was 12-days-old, we had a health visitor come out. She said, to put our minds at ease, she would like us to see the GP. He took her SATs and they weren't reading good and we were sent to Durham Hospital. "She declined extremely quickly. By the time we got to Durham, Bella's oxygen was that low, that they were very worried and put her on medication". Lauren and Nathan said they were told if the medication worked and raised Arabella's oxygen levels, something was wrong. And it did exactly that, and Arabella was blue-lighted to the Freeman Hospital. Arabella at home the week before the surgery (Image: LAUREN ROBINSON) Lauren, who is a sales team leader and Nathan, a landscape gardener, were told Arabella had Tetralogy of Fallot, a group of four structural abnormalities within the heart that occur together. After receiving the news their baby had a congenital heart condition, Lauren said she was "horrified". "We felt guilty, because they explained that Bella had been struggling for those 12 days at home. It was traumatic. Going from what we thought was a perfectly healthy baby to essentially being told if we had left it a couple more hours Bella wouldn't have made it was horrifying", she said. Lauren continued: "Her heart had essentially struggled for nearly two weeks to the point that her pulmonary artery had completely closed by the time we got to the Freeman. That was on Wednesday, March 12 when we were brought in. We were kept in over the weekend, she was kept stable in ICU, then on the Monday she was fitted with a stent. "We were released on the Friday with a specialist formula to take home as she needed to put weight on for the surgery. So, we knew then she was going to need open-heart surgery, but ideally that's done between six and 11-months-old". But on May 28, baby Arabella was rushed back to the Freeman Hospital as her oxygen saturation levels had dropped dramatically and the family were told she would have to have surgery sooner. She underwent the operation on Monday, June 2 and is thankfully recovering well. Arabella after the surgery (Image: LAUREN ROBINSON) However, little Arabella's family have been told she will need surgery again in the future, as surgeons could not save her pulmonary artery. "They did all of the other fixes because Tetralogy of Fallot is actually four defects in one. They fixed the other three defects, but they had to cut her pulmonary artery out", Lauren said. Arabella's parents praised the surgeon who operated on their baby saying she saved her life. She said: "The surgeon, Louise Kenny, she is absolutely can't thank Freeman enough, because without them and without Louise Kenny, Bella wouldn't be here." Lauren and Nathan are currently staying in onsite accommodation at Freeman Hospital. A GoFundMe has been set up to help them with paying the bills and the costs of looking after Lauren's other two children, 13-year-old twins Lewis and Imogen. Lauren said: "The GoFundMe alleviates some of the pressure as Nathan is not working and I am on statuary maternity pay, so not a lot of money is coming in. We can't thank everyone enough who has donated". You can donate to the fundraiser by clicking here. Lauren and Nathan with baby Arabella (Image: LAUREN ROBINSON)
Free Malaysia Today
14-06-2025
- Health
- Free Malaysia Today
14-year-old needs RM90,000 for life-saving heart procedure
Nur Haziqah Mohd Rosdi suffers from atrial septal defect and mitral regurgitation. (Persatuan Kebajikan Sayap Kasih Malaysia pic) PETALING JAYA : One's teenage years are usually a fascinating phase of life. It's a time for self-discovery, dreaming big, and imagining the possibilities that lie ahead. For Nur Haziqah Mohd Rosdi, however, life is different. The 14-year-old has a severe congenital heart defect and is now in critical condition, urgently requiring life-saving open-heart surgery. Haziqah was born with atrial septal defect (ASD), or a hole in the wall between the two upper chambers of the heart. This causes oxygen-rich and oxygen-poor blood to mix, forcing the heart to work harder and reducing its efficiency. She also suffers from mitral regurgitation – a condition where the mitral valve, located between the left atrium and left ventricle, doesn't close properly. This causes blood to flow backward into the atrium during heart contractions. Although these conditions were present at birth, her parents had thought they weren't serious as she seemed healthy and active. And despite doctors having recommended surgery to repair the septal defect, the family put it on hold because of financial constraints. To compound matters, Haziqah's father and sister experience seizures. Both are unable to work and are registered as persons with disabilities (OKU). Her mother stays home full-time to care for the family, and they do not have a steady source of income. Haziqah hopes to get better, return to school, and take care of her family. (Persatuan Kebajikan Sayap Kasih Malaysia pic) This year, Haziqah's condition worsened significantly when she began to experience severe oxygen shortage, chest tightness and shortness of breath. Multiple hospital visits and tests revealed that the hole in her heart has enlarged and she is now in heart failure. She urgently needs surgery to close the hole in her heart and repair her mitral valve – a procedure that will give her a real chance of survival and improve her long-term quality of life. Sadly, the cost of RM90,000 is far beyond what her family can afford. The family has turned to Persatuan Kebajikan Sayap Kasih Malaysia (formerly known as the Malaysian Association for the Welfare of Mentally Challenged Children) for help. According to case worker Ben Wong, the association began fundraising for Haziqah's surgery on June 6. 'Your contribution, no matter how small, can bring her one step closer to healing. By donating, you're giving her a future filled with hope, laughter and the chance to grow up healthy,' he told FMT Lifestyle. For Haziqah, her family's well-being is ultimately what's important. 'I don't want my mum to worry. I want to get better, go back to school, and one day take care of my family,' she said. If you wish to donate, contributions can be made directly to Persatuan Kebajikan Sayap Kasih Malaysia, Ambank account number 8881 0609 91545. Please reference 'CASE 53' in your transactions. Kindly email a copy of your receipt to beniq70plus@ or send it via WhatsApp to Ben Wong at 010-238 7072. For further information, visit Persatuan Kebajikan Sayap Kasih Malaysia's Facebook profile. Persatuan Kebajikan Sayap Kasih Malaysia 118 & 120 Jalan Gasing, 46000 Petaling Jaya, Selangor
The Independent
31-05-2025
- General
- The Independent
Coroner has ‘no doubt' diagnosis could have prevented death of baby boy
A coroner has said there were 'missed opportunities' from 'many' medical visits which 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 heart defect in which the heart's lower half is reversed, which was never diagnosed despite at least 16 visits to medical staff in his 368 days of life. On Friday, the inquest at Kent and Medway Coroner's Court in Maidstone, heard that if Archie had been diagnosed earlier he would 'almost certainly not have died at the time he did'. Area coroner Sarah Clarke said: 'I have no doubt earlier recognition and diagnosis of a very rare heart condition would have made a difference to the outcome for Archie. 'There are many points in the chronology where there were missed opportunities to do something differently to make the diagnosis of Archie's condition more likely.' Archie's parents made repeated visits to Queen Elizabeth the Queen Mother (QEQM) Hospital in Margate, Kent, and to St James' Surgery in Dover, with concerns about Archie's breathing and constipation which did not lead to long-term diagnoses. The coroner continued: 'He died as a direct result of heart failure with an underlying congenitally corrected transposition of the great arteries – a rare condition that could have been diagnosed by an echocardiogram. 'Despite many presentations to medical personnel in the weeks and months leading up to his death, an echocardiogram was not undertaken.' His mother, Lauren Parrish, from Dover, recalled her son being labelled a 'mystery child' because doctors were not sure what was wrong with him. 'It felt like every time we sought medical help for his breathing he was diagnosed with some form of chest infection,' Ms Parrish said in a statement read by the coroner. Ms Clarke added that if a diagnosis had been found for Archie 'he would almost certainly not have died at the time that he did'. A report by paediatric cardiac surgeon Professor David Anderson noted an 'unacceptable' delay in Archie receiving an echocardiogram after being referred to QEQM by a GP on October 6. He wrote: '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'. Last week, Ravindra Kumar, a paediatric registrar at QEQM responsible for Archie on the night he died, cried in court describing how his work has changed since Archie's death. Asked what he would do differently, Dr Kumar said: 'I regret talking about Archie's condition in front of the family to others, to my colleagues, I learned a big lesson to be more compassionate.' Medical records and Dr Kumar's witness statement suggest he did not see Archie between 9.30pm and 1am on the night he died, the inquest heard. Archie's godmother Nikki Escudier read a pen portrait of Archie to the court. She said: 'Archie Squire was a shining light. A little boy whose laughter, love and joy touched everyone lucky enough to know him. 'Born on November 20 2022, Archie brought happiness into the world from the very beginning. 'In just 368 precious days, he filled every moment with warmth, laughter and the kind of love that stays with you forever. 'His smile lit up the room and his presence left a lasting mark on every heart he touched.' The coroner commended Archie's family on their support for each other throughout the process, and has asked the East Kent Hospitals Trust to provide further evidence of their updated action plans and procedures since Archie's death. At the conclusion of the inquest, Tracey Fletcher, chief executive of East Kent Hospitals, said: 'We offer our sincere condolences to Archie's family. We can only imagine the pain they have endured and we are truly sorry that we did not identify Archie's condition earlier. 'After meeting with Archie's family, we have made important changes to our service. These include one standard process for triage and booking of child referrals, and prioritising the assessment of children referred to us. We will examine further learnings identified through the inquest process. 'Staff across the trust now receive specialised training to improve how clinical concerns, diagnoses and plans are discussed with families in our care. The training for our children's health team specifically draws on lessons learned from Archie's death.'
BBC News
30-05-2025
- General
- BBC News
'Missed opportunities' to prevent death of baby Archie Squires
A baby boy "almost certainly would not have died when he did" if his rare heart condition had been diagnosed, an inquest has Squires suffered heart failure just days after his first birthday and died in November 2023 after more than 10 visits to the Queen Elizabeth the Queen Mother (QEQM) Hospital in Clarke, area coroner for North East Kent, concluded that there was "no doubt" that an earlier diagnosis of a congenital heart defect would have "altered the outcome" of his Clarke also echoed a report by East Kent Hospitals University NHS Foundation Trust, which highlighted "missed opportunities" that could have prevented his death.
