Latest news with #SpinaBifida
Irish Times
26-05-2025
- Health
- Irish Times
Hip surgeries: Parents call for independent review by international experts
Parents of children who received hip surgeries in two Dublin hospitals are calling for the establishment of a clinical independent review of surgeries by international experts, after an audit found almost 70 per cent of surgeries carried out at the healthcare facilities were not necessary. On Friday, the Health Service Executive (HSE) published an independent audit on hip surgery thresholds for children with developmental dysplasia of the hip (DDH). It examined 147 cases across three hospitals – Temple Street , the National Orthopaedic Hospital Cappagh (NOHC) and Crumlin Hospital . In Temple Street, some 60 per cent of surgeries audited did not meet the clinical threshold for surgical intervention, with this proportion being 79 per cent in NOHC. Two advocacy groups – the scoliosis advocacy network and Spina Bifida and/or Hydrocephalus Paediatric Advocacy Group – held a meeting with more than 70 affected parents on Sunday evening. READ MORE Notes from the meeting show families are unhappy with the HSE's plan to offer all families the opportunity to have their case reviewed by a specialist medical team, believing this will 'only delay meaningful review and support'. [ Hip surgery audit: Almost 70% of operations in two children's hospitals 'unnecessary' Opens in new window ] Parents expressed 'serious concern' about this proposed clinical review pathway because the clinicians who carried out the unnecessary surgeries were not named in the report. The families said they have 'no confidence' in a review process. Instead, the families have called for an independent clinical review of all DDH surgeries. 'This must be carried out by a panel of international paediatric orthopaedic experts, each with a minimum of 10 years' experience and qualifications equal to or exceeding those of Irish consultants,' the families said. 'A core group of parents will liaise directly with the relevant authorities to ensure the panel has the full confidence of families. The composition of the panel must be formally agreed with the parent group.' The two advocacy groups also reiterated their call for a full public inquiry into Children's Health Ireland (CHI), stating there was a specific need to examine 'the systemic governance failures that resulted in preventable harm to their children'. [ Hip surgery audit: How many more times will we hear 'this can never happen again'? Opens in new window ] 'This inquiry is not optional. Families will directly negotiate the terms of reference with the Minister for Health and will not accept any process that excludes their leadership, scrutiny and approval,' they said. Following the publication of Friday's report, Minister for Health Jennifer Carroll MacNeill announced she has moved to 'strengthen governance and oversight' at CHI and NOHC. The Minister said this will be done by the appointment of two members of the HSE board to the board of CHI, strengthening the service level agreement between the two bodies and increasing involvement of the Dublin Midlands Region Regional Executive Officer. Further arrangements are also being considered in relation to this, Ms Carroll MacNeill said.
Irish Independent
27-04-2025
- Sport
- Irish Independent
Bursary in memory of passionate young Wexford man continues to help local GAA community
Colin Byrne sadly passed away in 2022 after a short illness. He was described as a much adored member of the community, whose infectious enthusiasm and passion for life endearing him to all who knew him. As his first love was the GAA, and known for wearing his club and county colours more than his beaming smile, Half Way House Bunclody launched the Colin Byrne Bursary in conjunction with his family to support the development of players and coaches within the club. The programmes have a focus on youth development and Gaelic games to ensure Colin's legacy will live on in assisting young people to maximise their potential. Thanks to great community support at a number of fundraising events, most notably the large barbecue held last year, the committee have announced the allocation of this year's funds, reaching over €6,000. The Wexford branch of Spina Bifida and Hydrocephalus Ireland will receive €1,500, as the cause is very close to the family's hearts. Spina Bifida is when a baby's spine and spinal cord do not develop properly, causing a gap. "Colin had many great days with the crew, going on tours and to matches. This was a cause very close to the heart of Colin and continues to be for the Byrne family,' they said. The Games Promotion Officer Programme is set to receive €1,500. This programme provides qualified coaches to primary schools and undergraduate teams, which allows the club to run weekly sessions. "We are lucky in Bunclody to have Wexford camogie star Anais Cullen as out Games Promotion Officer. This initiative aims to foster a love for our games among the students of Bunclody and Kilmyshall National School, promoting teamwork, leadership, and a healthy lifestyle,' they explained. A sum of €1,000 will go to Coiste Strength and Conditioning Programme which will empower individuals with the knowledge to make healthy choices. €500 will be allocated to Bunclody Tidy Towns, who said they were honoured to receive the funding. ADVERTISEMENT Learn more "Colin was a unique individual who was a great fan of the GAA and a great advocate throughout his life for people with disabilities. He was a great character, with a lovely sense of humour and lived life to the full. It is a wonderful legacy in memory of Colin and Bunclody Tidy Towns is honoured to receive such support,' they said. Kildavin National School's sensory room will receive €300, while another €300 will be given to Pieta House and Gavin Glynn organisations. A further €300 will go towards Bunclody's Christmas lights. The bursary also sponsored a set of jerseys for the club's Heroes Nursey, which were presented last November. Sliotars and helmets were also sponsored for the national schools in the parish. Following great success, the committee is determined to continue their work while keeping Colin's memory alive. "We as a committee were blown away by the support for the Colin Byrne Bursary Fund in 2024. The funding allocations exemplify the funds founding principal to enable young people to maximise their potential. The bursary will continue its fundraising efforts into 2025 and beyond, and we hope you will join us in carrying on Colin's legacy. The 2025 Coin Byrne Bursary barbecue will take place on Sunday, May 4 in Murphy's Tig Leath Slí.
Yahoo
04-04-2025
- Yahoo
Philly plane crash: Victims remains being returned to Mexico
The Brief The remains of six people aboard a medical plane that crashed in Northeast Philadelphia are being returned to Mexico. An 11-year-old pediatric patient and her mother were among those aboard the doomed plane. A 37-year-old man who was sitting in a car at the time of the crash was also killed. PHILADELPHIA - The remains of six people who were aboard a medical jet that crashed in Northeast Philadelphia shortly after take-off will be returned to Mexico. Among the plane passengers was a pediatric patient who had just received crucial care at a Philadelphia hospital and her young mother. The doomed plane was headed to Missouri on its way back home to Mexico when it fell from the sky less than a minute after leaving the ground. What we know A somber ceremony was held outside the Mexican Consulate in Center City on Thursday night to honor the six people who died in the plane crash. The remains were placed in a vehicle and taken to Philadelphia International Airport where they were flown back to Mexico to be laid to rest. Valentina Guzman Murillo, an 11-year-old who just received life treatment for Spina Bifida in Philadelphia, and her mother,Lizeth Murillo Osuna, died in the crash. The four-person crew were identified as Capt. Alan Alejandro Montoya Perales, co-pilot Josue de Jesus Juarez, Dr. Raul Meza Arredondo, and paramedic Rodrigo Lopez Padilla. The backstory Investigators say the plane was in the air for less than a minute when it fell from the sky and crashed near Cottman Avenue near Roosevelt Mall. The crash was captured by several cameras around the populated Northeast Philadelphia neighborhood and showed a massive explosion and fireball. Seven people, including all six aboard the plane and one person on the ground, were killed in the fiery crash that left a massive crater near a parking lot. Investigators say the cockpit voice recorder that was recovered from the rubble did not capture the flight's final moments. The flight was in communication with air traffic control, according to the NTSB, and there was no distress call received from the four-man flight crew. The plane's Enhanced Ground Proximity Warning System, which investigators believe "may contain flight data in its nonvolatile memory," was shipped to the manufacturer to see if data can be recovered.
Yahoo
26-03-2025
- Health
- Yahoo
Wahiawa family one of first to receive fetoscopic surgery
HONOLULU (KHON2) — A severe spinal defect threatened the life of a Wahiawa woman's unborn child. Now more than a year later, her baby is thriving thanks to a successful surgery before birth. In 2023, Joy Wright was a busy wife and mom of three about welcome her fourth baby. Everything was fine until it wasn't. Missing OCCC inmate captured in Kaimuki 'My husband and I were just kind of floored with the news kind of grieving. Our vision for the future, it was just going to be forever changed,' stated Wright. Wright was 23 weeks pregnant with Isla when her baby was diagnosed with a severe form of Spina Bifida, a condition that occurs when the spine doesn't completely wrap around the spinal cord and leaves an opening in the spine that can lead to serious complications. Baby Isla had a hole in her spine, which caused spinal fluid to leak, according to Wright.'It happens on average about one in five to 6,000 live births,' said Dr. Christopher Derderian, pediatric and fetal surgeon. Despite the risks, Wright traveled to Colroado while 26 weeks pregnant to undergo fetoscopic surgery and save her baby. 'There's so many unknowns, it was hard to see that there's a moment where I knew she was going to be all right. Even if no one else is giving you that hope, you got to hold on to it because that will keep you floating through some really dark times,' Wright said. Download the free KHON2 app for iOS or Android to stay informed on the latest news According to Children's Hospital Colorado, research has shown that when compared to surgery after birth, prenatal MMC repair results in better motor function and a 50% decreased need for a shunt to divert cerebral spinal fluid. Surgery before birth decreased exposure of nerves to amniotic fluid and allows the baby's skin to grow around the repair as they continue to develop in the womb. 'There are very few centers in the country that offer prenatal surgery for spinal bifida,' Derderian said. 'We're putting small cameras into the baby's womb repairing the abnormality at that time, before the baby is born, with the hopes that these babies will not will be born without these abnormalities.' Now at more than a year old, Baby Isla is meeting all her milestones. 'I was told that she may never walk or talk. She's so expressive and learning how to be mobile in her own way. She's crawling, she's using her legs a lot more than we ever anticipated,' Wright said. Copyright 2025 Nexstar Media, Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.
Yahoo
12-03-2025
- Health
- Yahoo
Remarkable Women: ‘Love from Liam' Foundation helps families feel supported
DUNCANSVILLE, Pa. (WTAJ) — Ashlyn Dugan always sees the good in everything, especially when she found out she was pregnant with her first child. 'When I found out that I was pregnant with Liam, at my anatomy scan, the doctors here had no idea what he had. And they told us to terminate Liam, so that was hard as a 21-year-old young mom, your first time pregnancy, and you're like, oh, my gosh,' Dugan said. Ashlyn wanted Liam to have a fair shot at life, so she got a second opinion despite the doctors' recommendation. 'They referred us to the Children's Hospital of Philadelphia. We did many tests, like MRIs, bloodwork, and sonogram. We're just waiting to see what the outcome was for this baby. And I remember coming in the room, and she came in and she said, your son will be perfect. Your son will walk, your son will talk, your son will be a big light in the world. And that he is. He is five, going to be six now. Yes, he's had some challenges. But he's doing awesome today,' Ashlyn said. Remarkable Women: Cindy Kolarik with the Jared Box Project Liam was diagnosed with Spina Bifida, a condition that affects the spine and is usually apparent at birth. It is a type of neural tube defect, according to the CDC. Ashlyn had no knowledge, and few resources surrounding the condition. However, to never let other parents feel alone, she started Love From Liam, a non-profit organization that provides resources and equipment to children with spina bifida. 'I have made my pain, my purpose. And so the pain that I went through, with having Liam, I have made it my purpose and my desire to change the view of spinal bifida. And it isn't a death sentence. It is much more than that,' Ashlyn said. Her positive attitude also extends to her community, where she and her husband opened a coffee shop, Coffee On 3rd, almost three years ago. 'Ashlyn is extremely laid back. She's calm, collected all the time. Nothing is a stupid question with her. She's always there with a helping hand. So it's nice to have someone that you know that you can go to for anything,' Mikaila Leaper, an employee at the coffee shop said. The person who highlighted Ashlyn's story also spoke about the impact that she has. 'I could go on about her accomplishments, but what is most astounding about them, is that she does it without wanting praise or recognition. Ashlyn brings people together, includes them, makes others feel seen and heard, helps them financially without ever showcasing it, and supports local businesses, all while upholding her family and continuously giving the Glory to God,' Veronica Hoover, Ashlyn's cousin-in-law said. As for Liam, having Spina Bifida doesn't make his family look at him any differently. In fact, he's the perfect big brother to Ashlyn's second child, Lawson. 'We treat him like a normal little boy and that he is, and the challenges that we go through, we just make sure to make it a point that, yes, it sucks that you have to go through this, but just like a kid has to wear glasses, you will have to wear braces or things like that. So we make it very normal for him. And ever since we have done that, he is thriving,' Ashlyn said. In September, Liam will be going to the first grade. Copyright 2025 Nexstar Media, Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.
