Podcasts about heterotaxy

In this podcast, Dr. Valentin Fuster reviews a groundbreaking study on intraoperative conduction mapping to prevent postoperative atrioventricular block (AVB) in children with complex congenital heart disease. The study highlights how mapping the His bundle during surgery significantly reduces the need for pacemakers, particularly in high-risk populations like those with Heterotaxy syndrome and non-Transposed Great Arteries, offering a promising tool to improve long-term outcomes for these patients.

This week we delve into the world of the single ventricle when we speak with Dr. David Hoganson, Assistant Professor of Surgery at Harvard Medical School about a recent work he co-published with investigators from Boston Children's Hospital on computational fluid dynamic modeling in the planning of the Fontan operation. Single ventricle heterotaxy patients with interrupted IVC are at enhanced risk for the development of pulmonary AVM's due to flow maldistribution to the pulmonary arteries from the hepatic veins in a Fontan. Can a computational fluid dynamic model predict which operative approach would result in the most balanced hepatic venous flow distribution? Can this reduce the incidence of pulmonary AVM's? How well did the models predict the actual pulmonary flow measured after surgery on CMR? Who beyond the heterotaxy patient might benefit from this approach? Dr. Hoganson offers us a peek into the world of personalized surgery in this week's exciting episode.         DOI: 10.1016/j.jacadv.2024.101057

Send us a Text Message.What happens when your entire world is defined by hospital walls and medical jargon? On "Heart to Heart with Anna," we share the poignant and raw journey of James Robinson, a father who walks us through the emotional highs and profound lows of raising his son Nadav, who was born with a congenital heart defect known as single ventricle heterotaxy. James recounts the myriad surgeries, complications like asplenia, and the heart-wrenching impact of eventually losing Nadav. This episode offers deep insights into the resilience required to face such relentless challenges and the indelible way it shapes family identity and daily life.Explore the extraordinary resilience of families navigating medical crises. Genetic testing unveiled a unique mutation in the H5 gene carried by both parents, prompting profound reflections on fate and family dynamics. James shares invaluable strategies for maintaining family connections during prolonged hospital stays, emphasizing the importance of honesty and openness. The emotional journey reveals lessons about life, love, and humanity learned through the lens of a family's extraordinary experience with severe health issues.Finally, we highlight the vital role of the hospital ecosystem in preserving humanity. Through heartfelt anecdotes, James discusses the indispensable support from nurses, therapists, and other professionals who added depth and compassion to Nadav's care. This episode also explores the lasting impact of connecting with a community of adult congenital heart disease survivors, offering solace and continuity for those affected. Join us for a compelling and heartfelt conversation that underscores the power of shared experiences and the transformative strength that love and community bring in times of profound adversity.Helpful Links Mentioned in the Episode:James Robinson's website: https://morethanamemoir.com/Leigh Kamping-Carder's Interview with James Robinson: https://theheartdialogues.substack.com/p/meeting-adults-with-congenital-heart-diseaseWe appreciate it when people support Hearts Unite the Globe podcasts. Thank you to our newest supporters -- Annie Ulchak (Patreon) and Judy Miller (Buzzsprout)!Support the Show.Anna's Buzzsprout Affiliate LinkBaby Blue Sound CollectiveSocial Media Pages:Apple PodcastsFacebookInstagramMeWeTwitterYouTubeWebsite

Join Tay and Jer for a compelling episode featuring Ian Hawkins, an international events host, esteemed author, and distinguished business journalist. Ian shares his courageous tale of living with complex congenital heart defects, heterotaxy syndrome, and the loss of autonomy during childhood hospitalization. Transitioning from comedy to journalism, he discusses battling alcoholism and seizing opportunities. Amid the pandemic, bedridden with Covid-19, Ian defied odds by launching a successful business. His resilient spirit and transformative experiences serve as a beacon of hope, highlighting the human capacity to overcome challenges. Tune in to hear a captivating narrative of resilience, reinvention, and unwavering optimism. Join the post-episode conversation over on Discord! https://discord.gg/expeUDN

Join Tay and Jer for a compelling episode featuring Ian Hawkins, an international events host, esteemed author, and distinguished business journalist. Ian shares his courageous tale of living with complex congenital heart defects, heterotaxy syndrome, and the loss of autonomy during childhood hospitalization. Transitioning from comedy to journalism, he discusses battling alcoholism and seizing opportunities. Amid the pandemic, bedridden with Covid-19, Ian defied odds by launching a successful business. His resilient spirit and transformative experiences serve as a beacon of hope, highlighting the human capacity to overcome challenges. Tune in to hear a captivating narrative of resilience, reinvention, and unwavering optimism. Join the post-episode conversation over on Discord! https://discord.gg/expeUDN

Heather's world turned upside down when she found out that her youngest baby girl would be born with a congenital heart defect and Heterotaxy. Heather and her husband came to the conclusion that they had to do everything in their power to provide Madi with the greatest care.   Heart Mom Heather Speakman tells us her Heart Baby story in this episode. Heather has had to deal with the most difficult scenarios when it comes to being a Heart Mom as she fights her daughter's battle with heterotaxy and hypoplastic left heart syndrome.   Follow her as she takes us on a journey filled with love, gratitude, and support through the highs and lows of her experience with a Heart Baby–and shares the purpose that her angel brought to her.   Discussed on this episode: What is Hypoplastic left heart syndrome and Heterotaxy? What is ECMO? What does Heather do now? What advice could Heather give to those who experience the same situation as hers?   Key Points: Getting to know Heather Speakman. Maddie as a heart baby Madi's diagnosis Preparing for the worst Finding support with other heart moms and care team The highest and lowest part of being a heart mom. Why did Maddie need to undergo ECMO Series of ups and down Maddue encountered Conversations of Maddie's progress Giving gratitude to medical workers who handled Maddie. The purpose of Maddie was given to Heather. Telling Maddie's story and being a heart baby. Heather as Maddie's voice. Heather's advocacy and awareness towards CHD.   Quotables: "Remind that in every pain even if it sucky, hard, and ugly there's also a purpose in it."   "There is nothing wrong or shameful in accepting help."

In this first of a 2-part series of episodes celebrating 8 years of “Heart to Heart with Anna. we have many of the Hearts Unite the Globe (HUG) Volunteers, the HUG Medical Advisory Board, and our Patrons celebrating and sharing with us.Our participants and links to their past shows (if applicable):HUG VolunteersRita ScogginsCongenital Heart Defect Awareness 2015! Heart Warrior Mom Raising Children to AdulthoodAllison HolmesThriving with CHDVicki LucasSpecial Education Transitions for Heart WarriorsThe Changing Landscape of Care for Young Adults with CCHDsWhat is Normal Child Development in Children with Complex Congenital Heart Defects?Megan TonesExpressions from the Heart on HeartWireTravels of a Heart Warrior!When You're Married to a Heart WarriorOne Heart Warrior's Educational Experience Down UnderCHD in the 1980s: Mum, Dad and DaughterJanet ThompsonDeborah Meisten NagarajanA Family Dealing with Tetralogy of FallotLorrie Hill:Waiting for a HeartStill Waiting for a HeartLaura Ryan:Heart Warrior Mom Raising Children to AdulthoodPanel Discussion on Labels or Terms Used in the Heart CommunityA Heart Warrior's Early Onset MenopauseLiving with a Bi-Directional Glenn HeartHUG Medical Advisory Board MembersDr. Brandon Lane PhillipsInterwoven Lives and Congenital Heart DefectsHeart Warrior Doctor-Nurse Team: Treating Pediatric Cardiology PatientsA Wish-Made FriendshipChris Donald, RNHeart Warrior Doctor-Nurse Team: Treating Pediatric Cardiology PatientsDr. Edward BoveAdvancements in Treatments for HLHS Heart WarriorsLearning about ccTGA and the Double Switch ProcedurePatronsJoey JaworskiSiblings in the CHD CommunityBrother of an HLHS WarriorFrank JaworskiHow Parents' Relationships are Affected by Having a Child with a CHDMiracle of a CCHD Baby's SurvivalPam DavisAlicia LynchJack LubbenOther Links:The Writers League of TexasAnnual Texas Book FestivalThe Heart Community CoSupport the show (https://www.patreon.com/HearttoHeart)

On the Eastern Shore of Maryland, September, is a much anticipated month as outdoor enthusiast hit the woods in chase of many game species, but for anglers it is a magical time of the year.  The Eastern Shore of Maryland and Virginia is home to some of the finest fisheries on the East Coast.  Whether you are chasing Speckled Trout, Drum, Cobia or the famous Rock Fish (Striped Bass) you always will be in for an adventure when a line is in the water.On September 24-26 the Tangier Classic fishing tournament will welcome anglers from all over the Mid-Atlantic region for some of the finest fishing that fishing tournaments can offer. Based out of Crisfield, Maryland  tournament goers will fish the Chesapeake Bay and partake in a plethora of family fun actives on the shores of Crisfield, Maryland.Brad Taylor and David Hooker join Steve Hallman for a conversation about the origins of the tournament and the "Why" behind it.  A portion of this years proceeds will go to the Drollette family to help with medical expensiveness for their youngest son Owen. Owen Drollette, was born on October 23rd, 2020. The family knew long before his birth that he would be a heart warrior. At twenty weeks pregnant, Owen's parents learned that Owen has several congenital heart defects, Heterotaxy, which means some of his organs are in the wrong place or shifted, and Polysplenia, which means he has multiple spleens.  Owen is nearly one year old and fighting hard everyday.  To learn more about the Drollette family and the Tangier Classic check out the links below and enjoy this conversation.Tangier Classic WebsiteTangier Classic Facebook PageOwen Strong Facebook GroupThe Interrupted Podcast WebsiteThe Interrupted Podcast Instagram PageInterrupted Outdoors Facebook PageInterrupted Outdoors Instagram

Heterotaxy Syndrome is a rare congenital disorder which usually includes a complex congenital heart defect. In this episode of "Heart to Heart with Anna," Faith Earnest, a heterotaxy syndrome survivor, shares with Anna what she has uncovered with her research, what her life has been like growing up with this rare congenital syndrome, and what she believes others with heterotaxy syndrome need to know.Other Heart to Heart with Anna Episodes involving heterotaxy syndrome:Ivemark Syndrome: Yesterday and Today Raising Awareness of Ivemark SyndromeHomeschooling a Special Needs Heart Warrior A Connection Between Flu, Arthritis & Heart Disease: A Mother's Instincts Facebook Heterotaxy Support Groups:Heterotaxy Connection SupportThe Heterotaxy NetworkPlease visit our Social Media and Podcast pages:Apple PodcastsFacebook YouTube Instagram If you enjoy this program and would like to be a Patron, please check out our Patreon page Support the show (https://www.patreon.com/HearttoHeart)

If you've ever wondered what Ivemark Syndrome is, you need to listen to this program! Ivemark Syndrome is a very rare constellation of birth defects which typically include malformations of the heart. Julia Mayfield is and adult born with a rare genetic condition called Ivemark Syndrome. According to the National Organization for Rare Disorders, Ivemark Syndrome is comprised of: 1) an absent or underdeveloped spleen, 2) cardiovascular anomalies and 3) abnormal placement of the organs in the chest and or abdomen. Julia’s heart is on the right side of her chest and she is missing her spleen. By the time she was nine, she had been through four open-heart surgeries, the final of which caused a massive stroke post-op. She also developed severe scoliosis and required surgery. She is joining us today to raise awareness of Ivemark Syndrome and share her experiences of growing up and adulthood with this condition.Please take a moment to follow us on your preferred social media platforms:iTunes: https://itunes.apple.com/us/podcast/heart-to-heart-with-anna/id1132261435?mt=2Facebook: https://www.facebook.com/HearttoHeartwithAnna/YouTube: https://www.youtube.com/channel/UCGPKwIU5M_YOxvtWepFR5ZwInstagram: https://www.instagram.com/hugpodcastnetwork/If you enjoy this program and would like to be a Patron, please check out our Patreon page: https://www.patreon.com/HeartToHeartSupport the show (https://www.patreon.com/HearttoHeart)

Anna Jaworski, the Host of "Heart to Heart with Anna" attended Podcast Movement 2019 -- a conference, especially for podcasters. While at the conference, Anna met a number of people who had been touched by congenital heart defects, a fact she became aware of after she met new people and talked about the different podcasts each person made. This spawned an idea in Anna's mind -- to actually record people's stories about how congenital heart defects has impacted their lives thanks to the friends and relatives who have been touched by congenital heart defects. Unlike most of Anna's episodes, this one was completely spontaneous and impromptu. Take a look at how people in the podcasting community have been affected by congenital heart defects in this interesting and informative interview.Please take a moment to follow us on your preferred social media platforms:iTunes: https://itunes.apple.com/us/podcast/heart-to-heart-with-anna/id1132261435?mt=2Facebook: https://www.facebook.com/HearttoHeartwithAnna/YouTube: https://www.youtube.com/channel/UCGPKwIU5M_YOxvtWepFR5ZwInstagram: https://www.instagram.com/hugpodcastnetwork/If you enjoy this program and would like to be a Patron, please check out our Patreon page: https://www.patreon.com/HeartToHeartSupport the show (https://www.patreon.com/HearttoHeart)

Host Kevin Patton examines variations in human anatomy, including the fabella bone, situs inversus, and more. 00:40 | Preview Episodes 04:15 | Sponsored by HAPS 05:48 | Fabella Bone 15:51 | Sponsored by AAA 16:11 | Situs Inversus 32:18 |  Sponsored by HAPI Online Graduate Program 32:57 | Variety of Anatomic Variations 42:43 | Nuzzel Newsletter   If you cannot see or activate the audio player click here. Questions & Feedback: 1-833-LION-DEN (1-833-546-6336) Follow The A&P Professor on Twitter, Facebook, Blogger, Nuzzel, Tumblr, or Instagram!   The essence of the beautiful is unity in variety. (Moses Mendelssohn)   1 | Preview Episodes 4.15 minutes If you are skipping over the Preview Episodes, which are each released a few days before a full episode, contain a lot of helpful content that you don't want to miss! Upcoming topics Word Dissections Book Club selections Bergman's Comprehensive Encyclopedia of Human Anatomic Variation by R. Shane Tubbs, Mohammadali M. Shoja, Marios Loukas originally created by Ronald Bergman amzn.to/2Lg597V Sometimes, feedback and other interesting stuff! Preview for this episode: Episode 43 Intro | TAPP Radio Preview   2 | Sponsored by HAPS 1 minute The Human Anatomy & Physiology Society (HAPS) is a sponsor of this podcast.  You can help appreciate their support by clicking the link below and checking out the many resources and benefits found there. AND mention your appreciation to the HAPS leadership while you are at the conference—or anytime that you communicate with them. Anatomy & Physiology Society  theAPprofessor.org/haps Kevin's Unofficial Guide to the HAPS Annual Conference | 2019 Edition | Episode 42     3 | Fabella Bone 10 minutes The fabella is a small, beanlike bone that may (or not) occur behind the knee joint. Recent evidence shows that it's showing up  more frequently in the population. Why? Fabella prevalence rate increases over 150 years, and rates of other sesamoid bones remain constant: a systematic review (recent research article) my-ap.us/2WkRSMs Sore knee? Maybe you have a fabella (plain English report from the BBC) my-ap.us/2Wmd6cN Fabella x-radiograph (to use in your course) my-ap.us/2Wm6Di3 Improbable Destinies: Fate, Chance, and the Future of Evolution by Jonathan B. Losos  (book  on  updated  ideas  of  evolution) amzn.to/2L9fzCE Browse The A&P Professor Book Club my-ap.us/bookclub    Fabella image: Jmarchn (my-ap.us/2Wm6Di3)   4 | Sponsored by AAA 0.5 minute The searchable transcript for this episode, as well as the captioned audiogram of this episode, are sponsored by The American Association of Anatomists (AAA) at anatomy.org. Their big meeting is in April at the Experimental Biology (EB) meeting in Orlando FL. Check it out! Searchable transcript Captioned audiogram      5 | Situs Inversus 16 minutes Situs inversus is a mirrorlike flipping of visceral organs that occurs in embryonic development. Also called situs transversus or situs oppositus. Normal siting of organs is called situs solitus. Situs inversus and my 'through the looking glass' body (recent article by someone living with situs inversus) my-ap.us/2WatPzP Body donor's rare anatomy offers valuable lessons (press release on recent 99-year old donor with situs inversus with levocardia) my-ap.us/2Wf5MzO Heart Transplantation in Situs Inversus Maintaining Dextrocardia (interesting study of transplanting 'normal' hearts into patients with dextrocardia) my-ap.us/2WmbTlL ERROR: In my discussion of the cast of situs inversus in the young man from the 1800s, I mixed up my left and right. Yikes. The appendix is on the right in situs solitus, but on the left in situs inversus. This was corrected in the audio file on 10 May 2019, but the correction may not be heard in all available platforms.    6| Sponsored by HAPI Online Graduate Program 0.5 minute The Master of Science in Human Anatomy & Physiology Instruction—the MS-HAPI—is graduate program for A&P teachers. A combination of science courses (enough to qualify you to teach at the college level) and courses in instructional practice, this program helps you power up  your teaching. Kevin Patton is a faculty member in this program. Check it out! There will be a HAPI table in the Exhibit Hall at the 2019 HAPS Annual Conference. Stop by and say hi! nycc.edu/hapi     7 | Variety of Anatomic Variations 5 minutes Perhaps variation is normal. And maybe "normal" is a mythical, but useful, construct we use in understanding human anatomy. Brief list of some human anatomical variations my-ap.us/2WrAC8q How do we handle anatomic variations (vs. "normal") in our A&P course? I'm thinking there isn't a best way. I'm thinking it's largely up to us as artists to decide what works best. Remember, in my world, teaching is both and art and a science. We are, among other things, artist of telling stories. Stories about the human body. So I think we need to really think about, play with, experiment with, different ways of telling our story of human anatomy so that at some point it's clear that we don't all look like the idealized sketches in our books and models on the lab bench. Or even all the elderly cadavers in our dissection lab. Perhaps we can begin by being clear and intentional about pointing out differences arising from development and aging, from the effects of sex hormones, from environmental influences, from the range of possible human activities (or lack of activity), then bring in all those variations in genetic code and variations in how embryological events  unfold, or maybe I should say fold. I think in the end, the best story of human anatomy is a story of the awesome and beautiful balance of both unity and variety in the human form.     8 | Nuzzel 1.5 minutes A daily collection of headlines of interest to A&P professors, curated by Kevin Patton nuzzel.com/theAPprofessor   If the hyperlinks here are not active, go to TAPPradio.org to find the episode page. More details at the episode page. Transcript available at the script page. Listen to any episode on your Alexa device. Need help accessing resources locked behind a paywall? Check out this advice from Episode 32 to get what you need! https://youtu.be/JU_l76JGwVw?t=440   Sponsors   Transcript and captions for this episode are supported by the  American Association of Anatomists. anatomy.org     The Human Anatomy & Physiology Society  also provides marketing support for this podcast.  theAPprofessor.org/haps     Distribution of this episode is supported by  NYCC's online graduate program in  Human Anatomy & Physiology Instruction (HAPI)  nycc.edu/hapi   Clicking on sponsor links  helps let them know you appreciate their support of this podcast!   Referrals also help defray podcasting expenses.  Amazon TextExpander Snagit & Camtasia The A&P Professor Logo Items   Follow The A&P Professor on  Twitter, Facebook, Blogger, Nuzzel, Tumblr, or Instagram!   The A&P Professor® and Lion Den® are registered trademarks of Lion Den Inc. (Kevin Patton)    

This week we review an impressive review of the large Australian/New Zealand registry of Fontan patients assessing the impact of AV valve regurgitation and failure on Fontan outcomes. We discuss this work with the senior author Yves D'udekem, Associate Professor of Surgery at The Murdoch Children's Research Institute and also speak with Professor Frank Cetta of the Mayo Clinic who authored a wonderful editorial on this work. Who is at most risk for AV valve failure at Fontan? How well do patients do with AV valve replacement or repair? We discuss all these issues this week on this exciting episode. doi: 10.1016/j.jacc.2018.12.025

This week we review an impressive review of the large Australian/New Zealand registry of Fontan patients assessing the impact of AV valve regurgitation and failure on Fontan outcomes. We discuss this work with the senior author Yves D'udekem, Associate Professor of Surgery at The Murdoch Children's Research Institute and also speak with Professor Frank Cetta of the Mayo Clinic who authored a wonderful editorial on this work. Who is at most risk for AV valve failure at Fontan? How well do patients do with AV valve replacement or repair? We discuss all these issues this week on this exciting episode. doi: 10.1016/j.jacc.2018.12.025

At Alex's 20-week ultrasound appointment, she and her husband learned that their daughter, Lucy, had heterotaxy and congenital heart defects. From that moment, their lives changed and they became advocates and fighters for their spunky daughter who is now one year old. In this episode, Alex talks about Lucy's birth, surgeries, hospitalizations and ER visits. She talks about how their cardiologist became one of their biggest champions and what a difference the congenital heart defect online community has made for them.  Alex recommends the poem Welcome to Holland and the Mended Hearts organization for parents going through similar situations. If you'd like to connect personally with Alex, you can do so on Instagram or Facebook.  Alex would like to share Lucy's diagnoses: Heterotaxy: right sided stomach, midline liver and gallbladder, mirror lungs, asplenia. Congenital heart defects: complex Single ventricle with: complete unbalanced AV canal defect, hypoplastic left heart, double outlet right ventricle, total anamoulous pulmonary venous connection, pulmonary atresia, and bilateral superior vena cava.

After hearing our episode about hearts, 3yo Ethan Chandra, from Middlesex, NJ, wanted to share the story of his own heart. In this podcast extra, Ethan and his 5yo sister Zoe and their mother, Ali, talk about what it's been like for Ethan to live with a condition called heterotaxy.

The United States Department of Education reports that homeschooling continues to grow with an estimated 1,770,000 homeschooled students in 2013. That is 3.4% of the school-aged population! This is an increase of 61.8% over the previous ten years. There are many reasons parents choose to homeschool their children but one obvious reason to homeschool a child with a congenital heart defect is to minimize a medically fragile child's exposure to germs and diseases. That's where today's Guest, Erin Ayscue, is an expert. As the mother of a child with a critical congenital heart defect, as well as other medical conditions and learning disabilities, Erin understands the importance of providing a learning environment rich in resources with minimal risk of exposure to illnesses that could hospitalize her child. Tune in to hear Erin share her experiences in homeschooling a special needs Heart Warrior with us. She'll share why she chose to homeschool her daughter, the kind of curriculum she has developed and suggestions and advice for others in the heart community. Support the show (https://www.patreon.com/HearttoHeart)

One of the problems many of our CHD children suffer from is "Failure to Thrive" and because the children with critical congenital heart defects usually have surgery within the first days or months of their lives, they may develop oral aversion (very probably because of being intubated for extended periods of time). Because many of our children have oral aversion, they frequently do not like foods of certain textures. This can make feeding our CHD children a great challenge. If you are suffering from this situation, this show is one you shouldn't miss! Our Guests today include Heart Mom, Danielle Leppo, and pediatric dietician, Kristi King. The discuss the diagnosis of Failure to Thrive and why some babies and children with congenital heart defects suffer from oral aversions and poor nutrition and what parents can do about it. Listen to our show to hear of others who have dealt with these issues and find out how they have overcome problems. There is hope!Support the show (https://www.patreon.com/HearttoHeart)