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    congenital

    Explore " congenital" with insightful episodes like "Christophe Faure – Esophageal Atresia for the Pediatric Gastroenterologist", "Congenital Syphilis Prevention", "Bethany and Hannah Keime are HeartCharged", "Embracing LIFE – Donor & Transplant Recipient - Audio" and "Growing Up In The 70s With A Congenital Heart Condition... Deb's Story" from podcasts like ""Bowel Sounds: The Pediatric GI Podcast", "National STD Curriculum", "The Paul Cardall Podcast", "LoveTalk Network" and "From The Heart: The HeartKids Podcast"" and more!

    Episodes (14)

    Christophe Faure – Esophageal Atresia for the Pediatric Gastroenterologist

    Christophe Faure – Esophageal Atresia for the Pediatric Gastroenterologist

    In this episode, hosts Drs. Jennifer Lee and Jason Silverman talk to Dr. Christophe Faure about tracheoesophageal fistula and esophageal atresia. This important congenital abnormality carries a host of potential future health implications that are important to understand and manage.

    Dr. Faure is a Professor of Pediatrics at Universite de Montreal and a pediatric gastroenterologist at CHU Ste-Justine.  He is also the director of the Esophageal Atresia Clinic at Ste-Justine and runs a basic research lab focused on discovering the mechanisms behind EA and studying new treatments based on tissue engineering.

    This episode is eligible for CME credit!  Once you have listened to the episode, click this link to claim your credit.  Credit is available to NASPGHAN members (if you are not a member, you should probably sign up).  And thank you to the NASPGHAN Professional Education Committee for their review!

    Important links:

    Learning Objectives:

    1. Understand the complications commonly experienced by children with esophageal atresia.
    2. Outline the recommended management of gastroesophageal reflux in children with esophageal atresia.
    3. Understand the role of the multidisciplinary team in the long-term surveillance and health maintenance of children with esophageal atresia.

    Produced by: Jason Silverman

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    As always, the discussion, views, and recommendations in this podcast are the sole responsibility of the hosts and guests and are subject to change over time with advances in the field.

    Follow us on Twitter, Facebook and Instagram for all the latest news and upcoming episodes!

    Support the show

    This episode is eligible for CME credit! Once you have listened to the episode, click this link to claim your credit. Credit is available to NASPGHAN members (if you are not a member, you should probably sign up). And thank you to the NASPGHAN Professional Education Committee for their review!

    As always, the discussion, views, and recommendations in this podcast are the sole responsibility of the hosts and guests and are subject to change over time with advances in the field.

    Check out our merch website!

    Follow us on Twitter, Facebook and Instagram for all the latest news and upcoming episodes.

    Click here to support the show.

    Congenital Syphilis Prevention

    Congenital Syphilis Prevention

    Congenital syphilis cases have tripled in recent years. Dr. Katherine Hsu, a Boston University Medical Center Professor of Pediatrics and a national authority on congenital syphilis, discusses when to screen, birth letters, and public health’s role in prevention with National STD Curriculum Podcast Editor Dr. Meena Ramchandani. View this episode's transcript  at www.std.uw.edu.

    This podcast is dedicated to an STD [sexually transmitted disease] review for health care professionals who are interested in remaining up-to-date on the diagnosis, management, and prevention of STDs. Editor and host Dr. Meena Ramchandani is an Assistant Professor of Medicine at the University of Washington (UW) and Medical Director of the Public Health – Seattle & King County Sexual Health Clinic. 

    Bethany and Hannah Keime are HeartCharged

    Bethany and Hannah Keime are HeartCharged

    On the 73rd Episode of The Paul Cardall Podcast, HeartCharged Executives Hannah and her sister Bethany Keime talk about their personal experience with Hypertrophic cardiomyopathy (HCM) and what they’re doing to help others live longer. Their disease is a common cause of sudden deaths among athletes. Paul, Bethany, and Hannah describe the disease and what they are doing to bring awareness and legislation to ensure a defibrillator is in every school and public building.

    VISIT THE OFFICIAL PODCAST WEBSITE:

    https://paulcardall.com/podcast

     

     

    ABOUT THE HEART IN HEARTCHARGED 

    Website: http://getheartcharged.org

    Instagram: https://www.instagram.com/heartcharged

    According to the HeartCharged website, “Once upon a time we were average high-school girls. Then we were diagnosed with hypertrophic cardiomyopathy (HCM), which is better than not being diagnosed but not as good as not having it. We were extremely athletic and HCM is the #1 killer of student athletes. It is asymptomatic so it most often kills without warning. But we were screened and found out we had it.”

     

    “We were immediately put on medications and made life-style changes so that our heart rates wouldn’t go up causing our hearts to fibrillate causing us to die. Then the condition got worse and those precautions weren’t deemed enough, so we had defibrillators implanted. The device would shock our hearts if they went out of control. Of course, we still take medications and are careful how we live.”

     

    They continue, “We are so grateful to have found out and be managing our conditions. With that gratitude, we are trying to warn the world. Childhood deaths from undiagnosed heart conditions are preventable. We can end them. But we need people prepared to act in an emergency and our children evaluated to discover these life-threatening conditions.”

     

    Because I have been given much, I too must give;
    Because of thy great bounty Lord, each day I live; (Grace Noll Crowell)
     

    • Because we were screened and it saved our lives, we want all children to have the heart screenings they need.
    • Because we had each other to share the day-to-day dealing with our conditions with, we want others to be able to connect with fellow heartcharged warriors and know patient-to-patient what this life means.
    • Because we have grown with gratitude, we want to express it so others know it exists.
    • Because our hearts still quiver, we want others to know we walk on without surety.
    • Because there are still sorrows in the world, we want people to feel our tears.
    • Because our souls still find joy, we want others to smile loudly.


    Join The Jolt

    • Follow us on Instagram @heartcharged
    • Stop preventable deaths. Prepare yourself and your community for a sudden cardiac emergency. Ensure heart conditions are found and treated.
    • Share patient-to-patient information. Understand and embrace the HeartCharged Warrior life.

     

    ABOUT BETHANY

    We of HeartCharged take great pride in our Instagram account, The Jolt @heartcharged. We consider it our home base because it is really where we started connecting with our international HeartCharged friends, and those that care for them and care about them. 


    When you look at that account, we believe you will see a put-together page. The look is coordinated though the content is mixed. Gratitude and grace, facts and funnies, self-awareness and selfies are all apparent. Posts cover red days, blue days, happy days, what-is-happening days. You see the person, the patient, the giver, the receiver. And knowledge is unleashed so action can follow. 


    And as is the page, so is the page’s creator, the visionary who puts it all together, Bethany.

     

    Bethany will tell you herself that when she was told she needed a defibrillator implanted that she, of course, worried what it would look like. She was, and is, a dancer, earning her BFA in Dance Performance. She communicates with her body. She had already been diagnosed with HCM for 5 years when she passed out a time then two. And all of a sudden, her doctors told her one day that in 10 days she would have a defibrillator implanted.


    She will tell you herself about the days of doubt between the implanting and the unveiling. She spent weeks waiting for the bandages to come off to finally see who she had become. And when she saw, and it was no particularly small thing she saw especially in comparison to her small body, she looked on her new look and smiled. She did not see imperfection but strength and resiliency. And each day since, she has at her side that reminder of what is important and why it’s important and why she needs to do what she does.

     

    Each piece of The Jolt page was picked with a purpose like Bethany’s outfit on a Saturday night. Even the color scheme – blue, red, white, gold - has HeartCharged meanings. Beta-blocker blue, heart red, oxycodone white, winner’s gold. The page is aptly named The Jolt because that is what a defibrillator sends to get someone's heart back in rhythm, and the page is ready to send a needed jolt to get someone's life back in rhythm.  The first post up on The Jolt is perhaps Bethany’s mission statement. It is a quote, “One day you will tell your story about how you overcame that battle you went through, and God will send you the exact people who need to hear that story.”

     

    And so on the page you will see her story. You will see her bulge in her bikini and know her battle. You will see her in a hospital gown and still grasp her glow. You will see her in leotards and lingerie, being charged or getting recharged. You may find that she flaunts her defibrillator, but she does so with a little girl’s fears and a strong woman’s faith. You may see her wonder and weep, strong and proud or down and out. But you will be able to see her. Her open-book approach to The Jolt page and her life makes her story just that easy to read and her battle just that easily known. 

     

    Bethany has gone down a path which others are traveling and she offers to take their hand as they do. She saw herself, she accepted herself, she showed herself, she showed gratitude. She is happy to help them do the same. And now that you know her, you can walk with her as a friend. 

     

    Email her at Bethany@getheartcharged.org

     

    ABOUT HANNAH


    If you’ve seen our Instagram account, The Jolt @heartcharged, then you’ve already met Hannah.  And you really are lucky to have met her because how many people can say they know somebody who has been shocked twice by their defibrillator while lip-syncing to Celine Dion’s "All By Myself" on their high-school stage and gone on to finish the performance? (and not even mention it so she could get the pity vote and take 1st place instead of 2nd.)

     

    You’ve been delighted by her quirky sense of humor (sharing spaghetti a la “Lady and the Tramp” with her ‘heart’ for her diagnosis anniversary). 

     

    You’ve been treated to her dramatic prowess (was she actually the one with HCM in One Tree Hill?).
     

    You’ve enjoyed her editing skills, her directing talents, and her ability to really put together something out of almost nothing - all talents she is using now while studying film in college. (The Bionic Woman, what surgical instruments did they use for that implantation?).
     

    You’ve observed her outreach (gathering World Heart Day wishes from dozens of her HeartCharged friends around the world).

     

    You've seen her political passion (voting, campaigning, interning, trying to elect those who will support the HeartCharged cause even if it’s while dancing on the streets in an apple costume).
     

    You see her putting to use the power of the spoken word (a Thespian and Spoken Word performer in high school, a tour guide, a podcast guest).

     

    You know she’s done some death-defying acts (not dying in her sleep after going into sudden cardiac arrest, that’s a good trick).
     

    You know she’s a constant at the cardiologist (awww there she is with Dr. Avila).

     

    You know her condition is being managed by meds (and lots of them plus activity restrictions, meaning her approved sports are shuffleboard and darts). You know she has a genetic condition (same genes as her sister, aunt, mom - but they definitely look severely different in her). You know she comes at her mission to see all children receive heart screenings from a variety of angles (including standing in a pool to photograph her bionic sister in a bikini). You know she likes to dress up and put on wigs (you gotta love that, she’s had to change roles plenty in life as well). And you will find that she is a person of intense faith (she spent 17 months serving a full-time ecclesiastical mission for The Church of Jesus Christ of Latter-day Saints in the honest-to-goodness best mission in the world, Utah Salt Lake City Temple Square).

     

    Meet Hannah. Love Hannah. Enjoy Hannah. We do!

    Email her at Hannah@getheartcharged.org

     

    LISTEN TO THE MUSIC OF PAUL CARDALL

    http://www.paulcardall.com

     


     

    Show your support by subscribing to the podcast. Please leave a review. 

    Embracing LIFE – Donor & Transplant Recipient - Audio

    Embracing LIFE – Donor & Transplant Recipient - Audio
    Co-hosts Marlene McMichael, Coach Kerri Brinkoeter, and Cathy Endebrock visit with Jennifer Tindell and Krystal Watson, childhood friends who lost touch with each other more than 30 years ago. Born with multiple congenital physical issues, Krystal learned to live life adjusting to her health problems which compromised both her heart and her kidneys. Although medical procedures helped with her heart condition, her kidneys began to fail. The two women reunited just over a year ago through social media and learned they shared a profound trust in God. The result was Jennifer’s Thanksgiving gift to Krystal – her own kidney to save her friend’s life.

    Growing Up In The 70s With A Congenital Heart Condition... Deb's Story

    Growing Up In The 70s With A Congenital Heart Condition... Deb's Story

    Deb was born in 1968 with a complex heart condition. It wasn't until the late 70s that Deb was able to have surgery for her condition. Deb credits her personal strength and resilience back to her experiences growing up with a heart condition.

    HEARTKIDS
    From The Heart is brought to you by HeartKids, the only national not-for-profit solely focused on supporting and advocating for people affected by congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au

    CREDITS
    Host: Rachael Knowles
    Guest: Debbie Mackellin
    Producer: Isobel Pritchard-Davies

    Heart And Life Updates With Rachael and Sam

    Heart And Life Updates With Rachael and Sam

    We catch up with co-hosts Rachael and Sam to hear how they are going on their journeys. Rachael and Sam also chat about the podcast - what they've learnt since starting the series, embarrassing moments they've shared during recordings, their favourite episodes, and more.

    HEARTKIDS
    From The Heart is brought to you by HeartKids, the only national not-for-profit solely focused on supporting and advocating for people affected by congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au

    CREDITS
    Co-hosts: Rachael Knowles and Sam Stolberg
    Producer: Isobel Pritchard-Davies

    One Of My Twins Was Born With A Heart Condition... Hannah's Story

    One Of My Twins Was Born With A Heart Condition... Hannah's Story

    When Hannah noticed one of her twins wasn't taking as much milk from the bottle during feeding, she never thought it could be a problem with her baby daughter's heart. The diagnosis that followed was serious. Baby Maddie needed multiple surgeries in her first years of life.

    In this episode, Hannah talks about her journey with bottle-feeding, the impact the CHD journey can have on siblings, what it's like starting school with a heart kid, managing developmental delays, the importance of creating a strong relationship with your child's school, and how to tap into the HeartKids community for support.
     
    HEARTKIDS
    From The Heart is brought to you by HeartKids, the only national not-for-profit solely focused on supporting and advocating for people affected by congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au

    LINKS
    Find our more about HeartKids Two Feet And A HeartBeat walk: https://www.twofeetheartbeat.org.au/

    CREDITS
    Host: Rachael Knowles
    Guest: Hannah Pearl
    Producer: Isobel Pritchard-Davies

    Growing Up With My Heart Condition... Caitlin's Story

    Growing Up With My Heart Condition... Caitlin's Story

    Caitlin was born with pulmonary atresia with a VSD, requiring three surgeries before the age of one.

    In Year 12, Caitlin was busy thinking about what formal dress she wanted to wear and her university admission score, when she was told she would need another procedure. Caitlin is now 20 and is about to sit the admission exam to study medicine. Her experience with her heart is part of the drive behind why she wants to become a doctor and help others.

    Caitlin is an amazingly resilient, driven and empowered young woman. In this episode, she talks all about what it was like growing up with her condition, how her heart has impacted her sense of self, and her dreams for the future!
     
    HEARTKIDS
    From The Heart is brought to you by HeartKids, the only national not-for-profit solely focused on supporting and advocating for people affected by congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au

    CREDITS
    Host: Rachael Knowles
    Guest: Caitlin Cranitch
    Producer: Isobel Pritchard-Davies

    How To Prepare For Open-Heart Surgery... Tips And Tricks From A Pro! Elle Pendrick

    How To Prepare For Open-Heart Surgery... Tips And Tricks From A Pro! Elle Pendrick

    After 5 open heart surgeries, Elle is a pro. She shares tips for how to prepare, what to expect during it, and the best ways to recover.

    How do you make sure you've got the right people on your medical team?

    How do you prepare psychologically?

    How can you manage the impact on work or study?

    What's it like waking up after surgery?

    What does pubic hair have to do with any of this?

    Elle and Sam answer these questions and more!

    For more information and tips, check out Elle's Ultimate Surgery Success Guide.

    HEARTKIDS
    From The Heart is brought to you by HeartKids, the only national not-for-profit solely focused on supporting and advocating for people affected by congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au

    LINKS
    Read Elle's blog: https://www.heartkids.org.au/news/2/open-heart-surgery-tips-tricks-from-a-pro
    Watch host Sam's video: https://youtu.be/qXH9mF9CynM

    CREDITS
    Host: Sam Stolberg
    Guest: Elle Pendrick
    Producer: Isobel Pritchard-Davies

    The Grief At The Heart Of It... Rachael Knowles' Story

    The Grief At The Heart Of It... Rachael Knowles' Story

    Can you be strong about your heart condition and grieve for it at the same time?

    Growing up, Rachael never let her heart condition get in her way. She found herself pushing through rather than processing some of the trauma she experienced. Rachael is now 24 and with the support of her family and health care team, she is navigating a journey to healing.

    Rachael also talks about what it was like growing up with CHD in a small rural town, how to advocate for yourself on your medical journey, and why being proactive on family planning is important for young women with CHD.

    HEARTKIDS
    From The Heart is brought to you by HeartKids, the only national not-for-profit solely focused on supporting and advocating for people affected by congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au

    LINKS
    CHD and Pregnancy (Podcast) with A/Prof Dominica Zentner: https://www.buzzsprout.com/1900105/10308023-pregnancy-contraception-and-family-planning-a-prof-dominica-zentner
    CHD and Family Planning (Fact Sheet): https://hkheartkids.blob.core.windows.net/assets/pages/11HKFSexualHealthandPregnancy_v2.pdf
    Listen to host Sam's story: https://www.buzzsprout.com/1900105/9682026-how-open-heart-surgery-changed-my-life-sam-stolberg-s-story

    CREDITS
    Host: Sam Stolberg
    Guest: Rachael Knowles
    Producer: Isobel Pritchard-Davies

    How Open-Heart Surgery Changed My Life... Sam Stolberg's Story

    How Open-Heart Surgery Changed My Life... Sam Stolberg's Story

    What is having open-heart surgery really like?

    Sam Stolberg was born with a heart condition. Growing up, his condition didn't impact him very much. Sam played high-level rugby league throughout high school. Then in 2017, at the age of 26, Sam received the news that he would have to have open-heart surgery within 90 days.

    Listen in to hear how Sam dealt with this life-altering news, his surgery and recovery, his thoughts on mental health and resilience, and what he's learnt over the course of his unique journey. Sam is also one of the hosts of this podcast.

    HEARTKIDS
    From The Heart is brought to you by HeartKids, the only national not-for-profit solely focused on supporting and advocating for people affected by congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au

    LINKS
    Watch Sam's video: https://youtu.be/qXH9mF9CynM
    Listen to Rachael's story: https://www.buzzsprout.com/1900105/10031016-the-grief-at-the-heart-of-it-rachael-knowles-story

    CREDITS
    Host: Rachael Knowles
    Guest: Sam Stolberg
    Producer: Isobel Pritchard-Davies

    Yoni Lewis Israeli about Growing Mini Hearts with Stem Cells

    Yoni Lewis Israeli about Growing Mini Hearts with Stem Cells

    On this week’s The Sci-Files, your hosts Chelsie and Danny interview Yoni Lewis Israeli. Heart disease is a leading cause of death around the world, and heart defects at birth are the most common of all birth defects in humans. Modeling the developing human heart in the lab using 3D heart organoids (or miniature hearts) allows access to developmental stages that cannot be studied in humans. Yoni's research focus is on creating heart organoids from human stem cells. Unlike previous models of the heart, these organoids have all the major types of cells that are present in the human heart, and they develop internal chambers as well as a vessel-like network. These organoids can be used as tools to provide new insight into human heart development. They also allow him to investigate the onset of diseases that affect human fetal heart development. For example, he is currently looking into the effect of diabetes during pregnancy which is known to increase the risk of congenital heart defects in humans. This organoid system allows him to both investigate the causes of these defects, and also screen for potential therapeutic agents. You can read more about his research here.
    If you’re interested in talking about your MSU research on the radio or nominating a student, please email Chelsie and Danny at scifiles@impact89fm.org. Check The Sci-Files out on Twitter, Facebook, Instagram, LinkedIn, and YouTube

    Episode 19 (Associate Professor Alison Salt)

    Episode 19 (Associate Professor Alison Salt)

    Detection vision development in infants and toddlers with congenital vision disorders and profound-severe visual impairment

    Alison T Salt, Michelle A O'Reilly, Elena Sakkalou, Naomi J Dale

    Abstract

    Aim:
    To investigate detection vision development in infants and toddlers with congenital disorders of the peripheral visual system (CDPVS) and severe to profound visual impairment (SVI/PVI).

    Method: This was a longitudinal observational investigation of a cohort of infants with CDPVS (entry age 8-16mo) followed up 12 months later. Detection vision (Near Detection Scale [NDS]) and resolution acuity (Keeler Acuity Cards [KAC]) were assessed at each time point. Relationships between detection vision, resolution acuity, and age were investigated.

    Results: The study cohort comprised 80 children (39 females, 41 males), mean age 13 months (Time 1) and 26 months (Time 2); 22 (27.5%) with PVI (light perception at best) and 58 (72.5%) with SVI (basic 'form' vision) at Time 1. All children achieved a measure with the NDS, however only 35 per cent and 56 per cent at Time 1 and Time 2 respectively did so on KAC. Those with PVI at Time 1 showed no further improvement at Time 2, but 87 per cent of children with SVI showed improvement in vision. The median change in NDS score was 1.0 (range 1-7, SD 1.68).

    Interpretation: Vision development continues after 12 months of age in many toddlers if they have basic 'form' vision. A measure of detection vision is feasible in very young children when resolution acuity measurement is not achievable.

    What this paper adds: The Near Detection Scale (NDS) can measure low levels of vision when acuity is not otherwise measurable. Vision can improve in toddlers with severe visual impairment who have some 'form' vision. Infants with light perception at best by 12 months are unlikely to show improvement in vision. There is a moderate negative relationship between the NDS and resolution acuity results.

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