Podcast appearances and mentions of pierre robin

In this episode, we travel across the globe to meet Kylie Bailey, a single mother from Australia whose life took an unexpected turn when her daughter arrived with a surprise cleft palate, later diagnosed as part of Pierre Robin Sequence.  Kylie's story is a beacon of courage and determination, reminding us that even in the face of adversity, love can conquer all. Her journey through medical complexities, single parenthood, and embracing her daughter's uniqueness is a testament to the human spirit's ability to adapt, fight, and find joy in the unexpected. Join Laura Arroyo as we delve into Kylie's inspiring journey of resilience, love, and determination. Want to share your story? Email us at ourforeversmiles@gmail.com. Want to be a show sponsor? Email us at ourforeversmiles@gmail.com Follow us @ourforeversmiles on social platforms We know you will have questions! Join our FB Community to discuss the weekly episode and speak directly to our guests. https://www.facebook.com/groups/1081522212884073/ This podcast is completely free for you, but if you'd ever consider supporting the show, we truly appreciate it. One way you can do that is by using our affiliate links. These are links to products we've mentioned on the show, and if you make a purchase through one of them, we might earn a small commission at no extra cost to you. It's a great way to show your love for the podcast and help us keep creating content that educates, empowers, and strengthens the cleft lip and palate community! First Bottle to Purchase After Palate Repair - Post Palate Repair Straw Trainer Juselle's Cleft Palate Bottle - Pigeon Bottle Specialty Feeder Sippy Cup for Pre Palate Repair Prep - Munchkin 360 Weigh your Baby at Home - Weighted Feeds Scale Squeezable Straw Training Bottle - Honey Bear Straw Cup Free Flow Cup for Pre palate Repair Prep - Reflo Smart Cup Pacifiers that have Worked for Cleft Lip and Palate Babies - Itzy Ritzy Pacifiers that have Worked for Cleft Lip and Palate Babies - MAM Pacifiers that have Worked for Cleft Lip and Palate Babies - Itzy Ritzy Scar Cream Recommended by Alexis Garcia, Cleft Lip Mom - bioCorneum - Pricey**  

Dans sa chronique ce lundi 13 novembre 2023, Laurent Gerra a imité Jacky Chiasson, l'abbé Pierre, Muriel Robin, Xavier de Moulins, Philippe Bouvard, Jean d'Ormesson, Laurent Ruquier, Jean-Marie Bigard, et Jeanfi Janssens. Tous les jours, retrouvez le meilleur de Laurent Gerra en podcast sur RTL.fr, l'application et toutes vos plateformes préférées.

Corinne Merlino was born with Pierre Robin Syndrome, a rare congenital birth defect that affects craniofacial development. Navigating life as a patient from a young age sparked her passion for science, medicine, and advocacy, and ultimately inspired her to pursue a career in genetic counseling.   Corinne currently works as a clinical research coordinator for -The Palliative and Advanced Illness Research- or (PAIR) Center- at The University of Pennsylvania. There she supports multiple studies focused on improving the effectiveness and efficiency of specialty palliative care services for seriously ill patients.    With our Executive Producer, Kira Dineen, Corinne also serves as Communications Lead for the DNA Today Podcast for over 3 years. Kira is also joining us today as a guest host for this conversation!    In 2020, Corinne received her B.S. in Biology and Healthcare Ethics from Saint Joseph's University. Corinne is currently a graduate student in genetic counseling at the University of Pennsylvania.   During the episode we mentioned Philly Phaces and the book and film Wonder.    Stay tuned for the next new episode of It Happened To Me! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”.    It Happened To Me is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today's Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.   See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com. 

Hej Vi hedder Cecilie & Martin og har været med i den seneste sæson af ‘De Sjældne Danskere', som fulgte vores nu 4 årige dreng Konrad. Derudover har vi Manfred på 3 år og Martin har 2 piger på henholdsvis 17 og 20 år også.At være med i podcasten var både en ny, men også en spændende oplevelse, hvor vi kommer omkring de mange tanker og følelser vi har været igennem de sidste 4-5 år.Cecilie og Martin

Pierre Robin Sequence is an interesting birth defect that needs to be addressed to help the baby with breathing and feeding. Today on Everyday Oral Surgery, Dr. Michael Markiewicz is back to tell us all about the nuances of treating this syndrome. In this episode, you'll hear all about what the sequence is, what causes it, and how it's diagnosed and treated. Dr. Markiewicz talks us through the process of distraction treatment, the medical team and their responsibilities, the complications that can arise from the procedure, and long-term treatment for these patients. As we are all well aware, post-op care is essential to the overall recovery of the patient and today, we discuss what that looks like for these children. Finally, Dr. Markiewicz shares his new favorite inspirational author with us. To hear all about the ins and outs of this interesting surgery, tune in now!Key Points From This Episode:A warm welcome back to today's guest, Dr. Michael Markiewicz. An overview of the Pierre Robin Sequence, where the name came from, and its cause.How to diagnose and treat Pierre Robin Sequence patients in the initial stages. The main goals and objectives Michael has with these patients.Who makes the decisions for children diagnosed with Pierre Robin Sequence. When they start distraction treatment and the process involved in the treatment. The kind of osteotomy Dr. Markiewicz does and why, and how long they spend in the OR.The importance of post-op care for these patients and how he manages their pain. The complications associated with these procedures and when they extubate. Why Dr. Markiewicz likes to overcorrect with the distractors and when they get taken off. What the post-op care looks like for these babies and why he prefers they stay in the NICU. How often Robin patients need clef surgery. Michael shares a few books from his new favorite author. Links Mentioned in Today's Episode:Dr. Michael Markiewicz — https://www.michaelmarkiewiczddsmd.com/Dr. Michael Markiewicz on Twitter — https://twitter.com/mrmarkiewiczmdDr. Michael Markiewicz on Instagram — https://www.instagram.com/drmichaelmarkiewiczmddds/Can't Hurt Me: Master Your Mind and Defy the Odds — https://www.amazon.com/Cant-Hurt-Me-Master-Your/dp/1544512287Never Finished — https://www.amazon.com/Never-Finished-Unshackle-Your-Within-ebook/dp/B0BJMN7RMVEveryday Oral Surgery Website — https://www.everydayoralsurgery.com/ Everyday Oral Surgery on Instagram — https://www.instagram.com/everydayoralsurgery/ Everyday Oral Surgery on Facebook — https://www.facebook.com/EverydayOralSurgery/Dr. Grant Stucki Email — grantstucki@gmail.comDr. Grant Stucki Phone — 720-441-6059KLS Martin promo code EOSExo22 — https://www.klsmartin.com/ 

Being born with Pierre Robin Syndrome meant life with a permanent tracheostomy - listen Tuesday as we hear Alii's incredible story.  You can find Alii on IG and TikTok @littlesilvertube  If you're enjoying our show, please consider rating and reviewing our show HERE, and share with your friends!  You can find us online IG @Ididnotsignupforthis.podcast FB @Ididntsuft TikTok @Ididnotsignupforthis.pod Twitter @Ididntsuft  www.patreon.com/ididnotsignupforthis www.ididnotsignupforthis.ca  www.buymeacoffee.com/idnsuft/wishlist

"Eu tenho uma amiga que tem um filho com Pierre Robin. Porém, nunca lhe perguntei qual é a causa e o motivo da boca ser assim. Porque é que esse Pierre Robin que deixa a boca pequena. Tem como reverter com cirurgia e tratamento? Quais são as causas dessa doença. Queria saber o motivo da criança ser afetada por essa doença." Para conhecer o Portal Atlas Lipicast: https://linktr.ee/atlaslipicast Assina e marca as notificações: https://www.youtube.com/c/RowneyFurfuro Vem participar do Projecto de Auto-exame da Fenda Lábio Palatina. Clica em: https://toquenoceudaboca.com

We talk with Dr. Brianne Roby from Children's Minnesota about airway evaluation and surgical management of the infant with retro/micrognathia. --- EARN CME Reflect on how this Podcast applies to your day-to-day and earn AMA PRA Category 1 CMEs: https://earnc.me/MGHRcG --- SHOW NOTES First, the doctors discuss the difference between micrognathia and retrognathia, two terms that are commonly and incorrectly interchanged. Micrognathia refers to an infant having a small mandible, while retrognathia means the infant's mandible is normal sized, but just recessed. Dr. Roby usually makes the distinction through physical examination by feeling the angle and body of the mandible. In infants with retrognathia, she is able to feel a long body and defined angle in the mandible. She notes that diagnosis of micrognathia will most likely be postnatal, as obtaining a perfect sagittal view for measurement of inferior facial angle in a prenatal ultrasound is very difficult. However, she notes that polyhydramnios, or excess accumulation of amniotic fluid, is a significant indicator of an underdeveloped fetal jaw. In her initial evaluation of an infant with micrognathia, she first confirms that the infant is stable and in optimal position. Then, she examines the infant for other comorbidities and syndromic developments. Although Stickler syndrome is the most common syndrome associated with micrognathia, Pierre-Robin sequence and Treacher Collins syndrome can also cause micrognathia. Before scoping the infant, she prefers to familiarize herself with the infant's anatomy and feeding/breathing patterns first. In order to do this, she collaborates with the NICU staff and encourages them to informally document the infant's behavior. Then, she will insert a bedside flexible scope through the infant's nose to confirm that the infant has glossoptosis and not just a benign enlarged tongue base. She emphasizes that a surgeon should always confirm that there are no other airway malformations before performing surgery to place a mandibular distractor. Besides glossoptosis, other important indicators for mandibular distraction are airway obstruction and feeding difficulties. Dr. Roby only performs mandibular distractions on babies that are gestationally full term (37-38 wks) and weighing over 2 kg. Next, Dr. Roby shares her tips for mandibular distraction surgery. Her general approach is to secure the airway first and then insert the distractor. She emphasizes that preparation for airway emergencies is the most important intraoperative consideration. She prefers to have an experienced anesthesiologist on hand and multiple methods to secure an infant's airway, including nasotracheal intubation, oral intubation, a Glidescope, a Telescope, flexible fiberoptic nasal intubation, a tracheostomy set, and manual ventilation. The longer time it takes to secure an infant's airway, the higher the risk of spontaneous laryngospasm and bleeding. The otolaryngologist can either place an internal or external distractor. For an internal distractor, the plates and screws are placed under the skin so only the distraction arm is visible. This device can only distract in one direction, so it is commonly used in Pierre-Robin sequence infants. External distractors contain hardware that must be inserted externally and can distract in multiple directions. Dr. Roby prefers to place an internal distractor to minimize scarring and maximize parent and nurse comfort. After the distractor is placed, it must be rotated daily to open the mandible. Dr. Roby turns the pins twice a day by 2 mm; she does 1 mm in the morning and 1 mm in the night. Her goal is to achieve a 12-14 mm distraction and a slight underbite in most infants. After achieving this distance, the plates have to be left in for 10 weeks in order for the bone to harden. After 10 weeks, she removes the distractor and observes the infant for improvement in feeding.

Rémi, est le papa de 3 enfants, Anton, 9 ans, Alma, 7 ans et Vadim, 2 ans ½. Son fils aîné Anton est atteint d'une maladie génétique rare, le syndrome de Pierre Robin, et de troubles autistiques. Il a dû être hospitalisé à plusieurs reprises et pour dédramatiser ces longs séjours à l'hôpital il a inventé avec lui des histoires fantastiques qu'il publie aujourd'hui dans une saga en quatre volumes : « Corba », aux éditions Les Arènes. Françoise Robert-Houdayer, psychologue clinicienne dans le service de génétique du centre de référence des anomalies du développement des Hospices Civils de Lyon, répond aux questions des internautes.

Hoje vamos falar de Sequência de Pierre Robin, o evento mais frequente entre as fendas isoladas do palato. Contamos com o testemunho na primeira pessoa  da Ana Rita. Mãe de uma criança com Seq. de P.Robin e Enfermeira do Atlas Lipicast!  Vamos explicar o que é Sequência de Pierre Robin e teremos também, toda a experiência da Enfª Cleide Mondini que antes de integrar a nossa Comunidade, dedicou sua vida profissional às Fendas, num dos maiores centros de tratamento de fissuras, o HRAC-USP.  A Sequência de Pierre Robin caracteriza-se pela presença de uma tríade de anomalias: a micrognatia (mandíbula pouco desenvolvida), a glossoptose (língua deslocada para trás/queda da língua) e a fenda palatina (céu da boca aberto). Esta sequência de acontecimentos que ocorrem numa fase muito precoce do desenvolvimento embrionário, foi descrita pelo médico francês. A mandíbula desenvolve pouco fica muito pequena, o que faz com que a língua assuma uma posição mais retraída que o normal impedindo o normal encerramento do palato; pode ou não estar associada a qualquer síndrome. Síndromes são situações mais complexas que implicam um conjunto de malformações que tem disferentes origens, mas que serão tratadas num episódio próprio, só sobre síndromes mais frequentes nas situações de FLP. Para conhecer e subscrever o portal: https://linktr.ee/atlaslipicast

Michel Pelletier a été embauché par Pierre Robin, en mars 1967, comme vendeur. Il a pris sa retraite fin 1998 après avoir vendu 1.200 avions neufs et des milliers d'avions d'occasion. Dans ce nouveau podcast de la collection "Les rencontres d'Aerobuzz.fr", il raconte ses 12.000 heures de vol, en solitaire, aux commandes des monomoteurs légers les plus divers.Hébergé par Ausha. Visitez ausha.co/politique-de-confidentialite pour plus d'informations.

This episode contains a detailed discussion with Dr. Amanda Gosman regarding her approach towards patients with Pierre Robin Sequence. 

Dans ce nouveau numéro "De l'Art du Cochon", Claude et Antoine reçoivent Pierre Robin, auteur de /L'Esthétique contre-cool/ (éditions Rue Fromentin). En réaction à l'idéologie hégémonique du "cool", Pierre Robin nous offre un guide pratique à l'usage de ceux qui veulent échapper à leur époque. Beaux quartiers déserts, groupes de rock froid, style vestimentaire anti-street-wear... Un manuel de bon goût et d'anticonformisme, proposé par un personnage haut en couleurs ! Si vous ne voulez manquer aucun de nos épisodes, suivez-nous sur les réseaux sociaux : ▶️ https://www.facebook.com/leplumeaupodcast/ ▶️ https://twitter.com/LPlumeau ▶️ https://www.instagram.com/leplumeaupodcast/ et abonnez-vous à notre mailing list : ▶️ https://forms.gle/79yNM32U3tpXZXtFA Le Plumeau est à écouter aussi sur vos plateformes favorites : ▶️ Apple podcast : https://apple.co/2G5TeUQ ▶️ Spotify : https://open.spotify.com/show/6RFczlimBaYxLTCu9Y56yP ▶️ Youtube : https://www.youtube.com/watch?v=o7hydhoGb5Q&feature=youtu.be

O podcast Saúde sem Complicações desta semana recebe o professor Cristiano Tonello, do curso de Medicina da Faculdade de Odontologia de Bauru (FOB) da USP, que também é chefe técnico do Departamento Hospitalar do Hospital de Reabilitação de Anomalias Craniofaciais da USP (HRAC-USP) em Bauru, para falar sobre malformações craniofaciais. A malformação craniofacial é uma condição que geralmente é apresentada desde o nascimento da criança. O problema recebe esse nome porque acomete a região da face e do crânio, podendo atingir os lábios, céu da boca, orelhas, olhos e, nos casos mais graves, a cabeça. Segundo Tonello, o termo “malformações craniofaciais” é bem geral e engloba desde as alterações mais comuns e congênitas, como a fissura labiopalatina, até as mais graves, que envolvem assimetria e deformidades no crânio. As causas da condição não são necessariamente genéticas e podem ocorrer por conta de doenças e uso de drogas e álcool durante a gestação, mas, na maioria dos casos, surgem em conjunto com algumas síndromes, como a Síndrome de Treacher Collins e a de Pierre Robin. Quando se trata de herança genética, Tonello afirma: “Uma vez que o paciente tem essa condição, os seus filhos têm uma chance de pelo menos 50% de terem também”. Para saber mais sobre as malformações craniofaciais e como elas podem impactar a qualidade de vida dos pacientes, ouça o podcast na íntegra acima. Saúde sem complicações Apresentação: Mel Vieira Produção: Mel Vieira e Flávia ColtriEdição: Rita Stella Edição Sonora: Mariovaldo Avelino e Luiz Fontana Coordenação: Rosemeire Talamone Edição Geral: Cinderela Caldeira E-mail: ouvinte@usp.br Horário: terça-feira, às 13h. Veja todos os episódios da Saúde sem complicações Você pode sintonizar a Rádio USP em São Paulo FM 107,9; ou Ribeirão Preto FM 107.9, ou pela internet em www.jornal.usp.br ou pelo aplicativo no celular para Android e iOS   .

It was discovered in utero that Ava would have PRS just like her dad. Jenna and Dan know what to expect but still rely on each other during challenges.

Jessica and her husband were shocked to learn that their daughter, Eliana, was born with a cleft palate.  A few days later they discovered she had some other abnormalities. She was diagnosed with Pierre Robin sequence.     Bearing the Burden Unexpected diagnosis Jessica required a c-section for the birth of Eliana.  After she was born, the nurses were examining her and discovered she had a cleft palate.  Jessica recalled, “One of the nurses came over to me because I was still on the operating table, and she said, ‘I just wanted to let you know that she is looking good, but she does have a cleft palate.’ I was trying to not be emotional and trying to be reserved, so I said, ‘okay’.” “Finally they finished her up and brought her over to me and laid her on my chest..I looked at her and thought she looked completely normal because when I heard cleft palate, my first thought was cleft lip.” The difference between cleft palate and cleft lip When a child is born with a cleft palate they have a split or opening in the roof of the mouth.  A cleft lip is when there is an opening or split to the lip, nose, and the upper jaw. It is possible to have both a cleft lip and palate or just a cleft lip or cleft palate.   Day three is when doctors realized there was more going on It wasn’t until Eliana was three days old when they realized there was more going on.  At first they thought she had a cleft palate and a recessed chin. However, while Eliana was in the NICU she had major breathing issues.   Her recessed chin was causing her tongue to fall backwards and block her airway.  Eliana was transferred to a hospital that could better suit her needs. Jessica said, “That’s when the doctor started talking to us about the Pierre Robin, and what she eventually had was a mandibular distraction.” Surgery at two-weeks-old Jessica shared Eliana’s experience saying, “At two-weeks-old, she had a mandibular distraction where they actually broke her jaw and put in distractors that help move the jaw forward in tiny tiny movements.  She had these little screws that would stick out behind her ears and twice a day at 7 am and 7 pm, they would turn them just a tiny bit, which would move her jaw a tiny bit forward.” “It took them about a month, but they moved her jaw forward to the point where her tongue wasn’t falling back. I remember..for the first time I saw her tongue past her gum line, and I was just shocked.  Before it was so far back there, it would only be if she was crying and have her mouth wide open that you could see her tongue.” Pierre Robin sequence Eliana’s case was an isolated event.  Meaning that the cause of her disability was random and not genetic.  The doctors were able to determine why she had a cleft palate. Since her chin was recessed, her tongue sat at the roof of her mouth as her palate was forming.  Her cleft palate is a U-shaped vs the typical V-shape.  Jessica said, “You’ll hear it referred to as Pierre Robin Sequence, because it is a sequence of events: your chin doesn't go forward, so then you get the cleft palate” Worrying about the future Jessica shared some of her thoughts while she was in the hospital recovering.  She said, “I worried about her getting older and dating, and was she going to find a spouse to love you despite this..you worry about her in grade school, what will other kids say” “But sometimes as kids like her get older, their chin doesn’t grow at the same rate as the rest of the facial features, so sometimes they have to have another mandibular distraction..am I going to have to go through this process with my nine-year-old who is going to understand and remember the pain that she is going through? There are still some of those worries.” Little by little Like most of the parents we interview, Jessica’s advice to parents with a new diagnosis is, “Take it one day at a time.  When you start trying to worry too far ahead, you get yourself into a worry rut.” She also gave amazing advice saying,

This episode covers Chapter 11 of Rosen's Emergency Medicine. Episode Overview: List the equipment needed for neonatal resuscitation List 5 questions to ask the mother during an imminent delivery Describe the components of the initial assessment of the newborn (APGAR) What is the management of meconium? When should oxygen be used in the neonatal resuscitation period? What is the indication for CPR in a neonate? Describe how to perform CPR on a neonate What are the indications for intubation of a neonate? List 4 reasons not to resuscitate a newborn Wisecracks What are some special considerations for resuscitating a preterm infant? Describe the Neonatal Resuscitation algorithm A quick review of specific neonatal disorders: Diaphragmatic hernia Meningomyelocele Omphalocele Choanal atresia Pierre-Robin sequence Neonatal Resuscitation Case (shownotes only)

This episode covers Chapter 11 of Rosen's Emergency Medicine. Episode Overview: List the equipment needed for neonatal resuscitation List 5 questions to ask the mother during an imminent delivery Describe the components of the initial assessment of the newborn (APGAR) What is the management of meconium? When should oxygen be used in the neonatal resuscitation period? What is the indication for CPR in a neonate? Describe how to perform CPR on a neonate What are the indications for intubation of a neonate? List 4 reasons not to resuscitate a newborn Wisecracks What are some special considerations for resuscitating a preterm infant? Describe the Neonatal Resuscitation algorithm A quick review of specific neonatal disorders: Diaphragmatic hernia Meningomyelocele Omphalocele Choanal atresia Pierre-Robin sequence Neonatal Resuscitation Case (shownotes only)