Podcasts about Trisomy

In this deeply personal and heartfelt episode of The Right Side, Doug Billings shares the full story of raising his son Michael, who has Down syndrome (Trisomy 21).From the overwhelming fear and questions in the hospital after Michael's diagnosis, to the incredible joy and blessings he has brought over the past 24 years, Doug offers hope and truth to every parent who has received — or may one day receive — a Down syndrome diagnosis.This episode was inspired by the recent announcement from YouTubers Jesse Ridgway and his wife, who chose to abort their baby after a prenatal Down syndrome diagnosis, and Lila Rose's powerful response on Fox & Friends.Doug explains why he calls the extra 21st chromosome “the Divine Chromosome” and why, if given the choice today, he would not change Michael's diagnosis.This is a message of hope, love, and truth for families — one that challenges the culture of death and celebrates the beauty and value of every life.If you or someone you love has faced this diagnosis, this episode is for you.God bless you and your family.to see the video version of this episode, click here: https://youtu.be/zcDuAxHcDtI#DownSyndrome #DivineChromosome #ProLife #ChooseLife #SpecialNeeds #DownSyndromeAwareness #Parenting #Fatherhood #Faith #ChristianTestimony #LifeIsBeautiful #Trisomy21Support the show

According to the National Institutes of Health, parent advocacy is the single strongest predictor of how many services children with intellectual and developmental disabilities receive. That reality becomes deeply personal in this powerful and heartfelt conversation with Sean Adelman and his daughter Devon Adelman. Sean is an orthopedic trauma surgeon, Air Force veteran, novelist, and graphic novel author who never expected his life would be transformed by a diagnosis of Trisomy 21, more commonly known as Down syndrome. As the first person in his family to earn a professional degree, Sean believed years of medical education and military discipline had prepared him for almost anything. But when his daughter Devon was born during his surgical residency, he quickly realized that neither medicine nor life experience had equipped him to navigate the realities of raising a child with an intellectual disability. Growing up as a military child, Sean had little exposure to individuals with developmental disabilities, and the expectations society placed on people with Down syndrome at the time were painfully limited. What followed was a journey of advocacy, uncertainty, growth, and ultimately transformation—not just for Devon, but for their entire family. Today, Devon is a thriving athlete, coach, employee, and independent adult who has become a tireless self-advocate. Together, Sean and Devon share how challenging assumptions, raising expectations, and embracing inclusion can radically reshape lives and communities. Their story is not simply about disability—it is about redefining success, discovering resilience, and understanding how our perceptions of others can either limit or empower human potential. This episode explores the emotional realities families face after a diagnosis, the importance of parental advocacy, the gaps that still exist in healthcare and education systems, and why storytelling has the power to change cultural understanding. Sean also discusses how his experiences as both a surgeon and a father inspired him to write novels and graphic stories that help audiences connect with the humanity behind disability and inclusion. If you have ever questioned what true success, independence, or belonging really means, this conversation will challenge and inspire you in profound ways.   For more information: https://www.raiseexpectations.com/eximius/ Learn more about your ad choices. Visit megaphone.fm/adchoices

Matthew Efird and his wife, Hannah, were joyfully expecting their second son when the word "abnormalities" during a routine ultrasound changed everything. What followed was a journey into anticipatory grief after their son Noah was diagnosed with Trisomy 13, a condition often described as “incompatible with life.” In today's episode, Matthew shares what it was like to walk through the remainder of the pregnancy with that knowledge—holding both hope and heartbreak at the same time. He talks about how he and Hannah navigated those months together, how they learned to communicate in the middle of grief, and the intentional ways they chose to spend their time with Noah before he was born.Matthew also shares about Noah's birth and the unexpected gift of 57½ hours together — time to hold him, to introduce him to family, and to fully experience what it meant to parent their son on this side of heaven.In this episode, we discuss: The joy of expecting a second child after a season of waiting  The moment everything changed at a routine ultrasound  Processing the word “abnormalities” and a Trisomy 13 diagnosis  Walking through anticipatory grief during pregnancy  How Matthew and Hannah supported each other in their marriage  Two simple but powerful questions that helped them communicate in grief  Choosing to be intentional with the time they had with Noah  Noah's birth and the gift of 57½ hours together  What it meant to parent Noah during his brief life Be sure to join us next week for the second half of this conversation, when Matthew shares what life looked like after Noah's passing and offers insight into grief from a father's perspective.Resources & Links: Matthew's book: Even Though We Will Website: https://eventhoughwewill.com/If this episode resonated with you, we invite you to share it with someone who may need encouragement today.I would love to hear your thoughts on the show. Click here to send me a message! (Though I read every message, I am unable to respond through this format.) ** IMPORTANT** - All views expressed by guests on this podcast are theirs alone, and may not represent the Statement of Faith and Statement of Beliefs of the While We're Waiting ministry.  We'd love for you to connect with us here at While We're Waiting! Click HERE to visit our website and learn about our free While We're Waiting Weekends for bereaved parentsClick HERE to learn more about our network of While We're Waiting support groups all across the country. Click HERE to subscribe to our YouTube channelClick HERE to follow our public Facebook pageClick HERE to follow us on Instagram Click HERE to follow us on Twitter Click HERE to make a tax-deductible donation to the While We're Waiting ministryContact Jill by email at:  jill@whilewerewaiting.org 

What happens when a diagnosis labeled "lethal" doesn't tell the full story? In this episode of Inside the Children's Hospital, Katie Taylor sits down with Nicole, a mom of five, who shares her daughter Charlotte's journey with Trisomy 13—a diagnosis often associated with limited survival and quality of life. After receiving devastating news over the phone while at work, Nicole and her husband were told their daughter likely wouldn't survive. But instead of accepting that narrative, they sought out information, second opinions, and a care team willing to partner with them. From navigating medical bias and a complicated NICU stay to bringing Charlotte home without nursing support, Nicole shares what it really looks like to parent a medically complex child—and the joy that exists alongside the challenges. This conversation highlights the importance of advocacy, informed decision-making, and viewing each child as an individual—not just a diagnosis. You'll hear: What it was like to receive a Trisomy 13 diagnosis unexpectedly and over the phone How Nicole and her husband navigated conflicting medical opinions and bias The critical role of second opinions and finding the right care team What life looks like caring for a child with a trach, ventilator, and G-tube How siblings adjusted and built meaningful relationships with Charlotte The reality of parenting without in-home nursing support Why quality of life is often misunderstood—and deeply personal This is a story of advocacy, resilience, and redefining what's possible What You'll Learn in This Episode What Trisomy 13 is and how it can present differently in every child Why it's important to ask questions and advocate within the healthcare system How medical bias can impact care decisions—and how to navigate it The value of support groups and connecting with other families What daily life can look like for families of medically complex children How siblings adapt and grow in families with high medical needs Why "quality of life" is subjective and should center the family's perspective Key Takeaway A diagnosis does not define a child's life—and when families are given the space, support, and information to make informed decisions, they can create a path filled with joy, connection, and meaning. Resources Mentioned SOFT (Support Organization for Trisomy 13, 18, and Related Disorders) Extra to Love Hope for Trisomy Emersynn Isla Shining Star Foundation Asher's Answer Trisomy 13 & 18 Parent Support Groups (Facebook communities) Understanding Trisomy 13 Genetic and Rare Diseases Information Center (GARD) https://rarediseases.info.nih.gov AAP Article: Guidance for Caring for Infants and Children with Trisomy 13  Follow Charlotte on Facebook This episode is a powerful reminder that behind every diagnosis is a child, a family, and a story that deserves to be fully seen and understood. If you liked this episode, listen to these Inside the Children's Hospital Episodes: A daughter with Trisomy 18 Trisomy 21 Story   Connect with Us Subscribe: Never miss an episode on Apple Podcasts or Spotify. Visit insidethechildrenshospital.com to search stories and episodes easily Follow us on Instagram for updates and opportunities to connect with other parents Download SupportSpot: receive Child Life tools at your fingertips. Leave a Review: It helps other families find us and access our resources! The medical information provided is not a substitute for professional advice; please consult your healthcare team. Key Search Terms Trisomy 13, Patau syndrome, Trisomy 13 prognosis, Trisomy 13 life expectancy, Trisomy 13 baby thriving, Trisomy 13 and 18 support, SOFT organization Trisomy, NIPT high risk results, amniocentesis Trisomy 13, medical advocacy NICU, DNR without consent NICU, hospital transfer NICU, medically complex child at home, trach and ventilator at home baby, pediatric rare diagnosis, child life specialist NICU siblings, NICU sibling visits, postpartum depression NICU, Trisomy 13 quality of life, rare chromosome disorder support, AAP Trisomy 13 standards of care  

Abnormalities. That is the word that changed Matthew and his wife Hannah's lives forever. They went in for a routine ultrasound, their almost two-year-old son Walker playing happily beside them in the waiting room, and left knowing that their lives would never be the same, and that their son Noah was unlikely to live. What followed was six months of hurrying up and waiting. Six months of grieving a diagnosis before they ever had to grieve a death. Six months of doctor's appointments and phone calls and learning, in real time, what it means to carry an impossible weight while the rest of the world keeps moving. Noah was born with Trisomy 13, a genetic condition that is almost always fatal. He lived for 57 and a half hours. And Matthew will tell you, that was 57 and a half hours more than they ever expected to get. In this conversation, Matthew shares what those hours looked like, what those six months looked like, and what the six years since have looked like. He talks honestly about the fog of grief, about learning to let people in, about the two questions he and Hannah developed that he believes saved their marriage. He talks about the moment a mentor told him it was okay to have a good day, and how he wept on the phone, because he couldn't imagine it. And he talks about how, five years after Noah's death, he sat down to journal on Noah's birthday and realized something that took his breath away. Noah is the only son he never let down. He was fully present for every moment of his son's entire life. Out of that realization, and out of six years of quietly sending care packages to families navigating terminal diagnoses, came the Even Though We Will Foundation, and a book by the same name, released this week. The title is their family's mantra, rooted in Psalm 23. Even though we walk through the valley of the shadow of death, we will fear no evil. Not because Andy died, this happened. Not because Noah died, this came to be. But even though — and in that even though, something beautiful still can. Matthew also writes about something rarely heard from a grieving father, what it looks like to watch your favorite person in the world suffer, and feel utterly powerless to fix it. What it means to be a doer, a leader, a fixer, and suddenly not be able to do any of those things. And what it means to fall back on a faith that, in the end, held them both. Even Though We Will is available now at EvenThoughWeWill.com and on Amazon.

Pastor Dan and Karen Kempin share about the life of their daughter Katherine, who was diagnosed with Trisomy 18 shortly after birth.   Bio: Dan and Karen Kempin have been united in marriage and ministry for 30 years, faithfully serving the Lord and His Church together. Dan serves as Senior Pastor at St. John's Lutheran Church in Midland, Michigan, and Karen serves alongside him as Director of Worship Music. Together, they have been blessed with four children.  Resources: Email us at friendsforlife@lcms.org LCMS Life Ministry: lcms.org/life  Not all the views expressed are necessarily those of the LCMS; please discuss any questions with your pastor.

Recap and review the top pearls from episodes #120: Muscular Dystrophy, #141: Cerebral Palsy from Birth to Adolescence & #126: Trisomy 21 with a few members of our production team! It's Fables from the Cribside! (FFTC), our series providing a rapid review of recent Cribsiders episodes for your spaced learning.

Before his daughter was born, Robin thought he had a sense of what it meant to be a dad. But after a prenatal diagnosis of Trisomy 13, that understanding started to unravel.In this episode, Robin reflects on what it was like to face a future filled with uncertainty, including the possibility that his daughter might not live long and might require a completely different kind of parenting than he had imagined. He shares how that uncertainty led him to emotionally distance himself early on, the role grief and fear played in that response, and how his connection to his daughter has grown and changed over time.This conversation also touches on learning to be present, understanding your role and strengths as a parent, and how isolating this life can feel, even as you look for connection with others who get it.This is one you can't miss.Links:Join The Rare Life newsletter andnever miss an update!Fill out our contact form to joinupcoming discussion groups!Listen to Ep 146: The Dad Perspective.Listen to Ep 151: Finding Other Disability ParentFriends.Listen to Ep 197: Difficulty with Making DisabilityParent Friends.Follow Robin on Instagram @thedadadays!Follow us on Instagram @the_rare_life!Donate to the podcast or Contactme about sponsoring an episode 

Fr. Mitch Pacwa talks Lent, TSA and more in his Cultural Connections segments. Jessica Steele of New Hampshire Legatus visits to talk about integrating faith and business as a woman. Plus, a look at navigating raising a child with Trisomy 18, and Fr. Leo Joseph Xavier details the Pious Union of St. Joseph.

In Part 2 of Becky's story, we pick up after her termination for T21 (Down Syndrome, Trisomy 21) and what life has looked like in the two and a half months since.Becky talks about how she found the TFMR community... and how even then, she felt alone in her specific diagnosis. She shares what it was like to post her story in a mommy group and have 11 people private message her saying "me too, but don't tell anyone."Becky talks about what nobody told her about the D&E procedure itself, that it was a two-day process. She talks about grieving loudly while her husband grieved quietly, and the moment she realized he was carrying the pain too, just differently.Becky closes with words for anyone right now in the thick of a Trisomy 21 diagnosis, deciding whether to end their pregnancy: you're going to be able to breathe again. The first breath will feel like a gasp. But somehow, time marches on.Thank you, Becky. Your baby boy was here, real, and so fiercely loved.

In Part 2 of Becky's story, we pick up after her termination for T21 (Down Syndrome, Trisomy 21) and what life has looked like in the two and a half months since.Becky talks about how she found the TFMR community... and how even then, she felt alone in her specific diagnosis. She shares what it was like to post her story in a mommy group and have 11 people private message her saying "me too, but don't tell anyone."Becky talks about what nobody told her about the D&E procedure itself, that it was a two-day process. She talks about grieving loudly while her husband grieved quietly, and the moment she realized he was carrying the pain too, just differently.Becky closes with words for anyone right now in the thick of a Trisomy 21 diagnosis, deciding whether to end their pregnancy: you're going to be able to breathe again. The first breath will feel like a gasp. But somehow, time marches on.Thank you, Becky. Your baby boy was here, real, and so fiercely loved.

Becky, TFMR mom and mom to one living kid, shares her story of termination for T21. Becky was almost 40 and considering IVF when she found out she was pregnant naturally. She was over the moon to be pregnant. Then came the NIPT call... at work... while she was in front of her classroom. A heartbreaking 93% chance of T21, Trisomy 21.In Part 1 of 2 of Becky's story, you'll hear how she decided to end her pregnancy after a Down's Syndrome diagnosis. Becky needed to feel 100% certain before she could move forward. So she got her placenta biopsied, and when the results came back confirmed, she and her husband considered the two potential pictures of their baby's future - and what it would mean for their whole family. They thought about their ages, their firstborn toddler, finances, divorce statistics, and a world that isn't always kind. Even then, Becky was still going back and forth on her decision when more medical information - a poor pregnancy diagnosis for herself as well - also came into play.Thank you for sharing about your baby boy and his Down Syndrome diagnosis, Becky.

Becky, TFMR mom and mom to one living kid, shares her story of termination for T21. Becky was almost 40 and considering IVF when she found out she was pregnant naturally. She was over the moon to be pregnant. Then came the NIPT call... at work... while she was in front of her classroom. A heartbreaking 93% chance of T21, Trisomy 21.In Part 1 of 2 of Becky's story, you'll hear how she decided to end her pregnancy after a Down's Syndrome diagnosis. Becky needed to feel 100% certain before she could move forward. So she got her placenta biopsied, and when the results came back confirmed, she and her husband considered the two potential pictures of their baby's future - and what it would mean for their whole family. They thought about their ages, their firstborn toddler, finances, divorce statistics, and a world that isn't always kind. Even then, Becky was still going back and forth on her decision when more medical information - a poor pregnancy diagnosis for herself as well - also came into play.Thank you for sharing about your baby boy and his Down Syndrome diagnosis, Becky.

Send a textDr. Sheri Fink, Pulitzer Prize-winning correspondent for The New York Times and author of Five Days at Memorial, joins us for a compelling discussion on the ethics of survival. Dr. Fink, an MD-PhD, discusses her recent article "Noah is Still Here," which chronicles one family's journey with Trisomy 18—a condition once universally deemed incompatible with life. She and Eli explore the shifting paradigms of care, the tension between medical prognosis and parental hope, and the "two truths" clinicians must hold when counseling families in the grey zone. A must-listen for anyone navigating complex bioethics in the NICU. Support the showAs always, feel free to send us questions, comments, or suggestions to our email: nicupodcast@gmail.com. You can also contact the show through Instagram or Twitter, @nicupodcast. Or contact Ben and Daphna directly via their Twitter profiles: @drnicu and @doctordaphnamd. The papers discussed in today's episode are listed and timestamped on the webpage linked below. Enjoy!

Winter speaks with Liz about her sweet little Ellie, who was stillborn at 38 weeks 2 days due to Trisomy 18. Liz talks about some of the things that have helped her after the loss and how that has sparked a desire to share the love she has for Ellie to the world through her foundation: Through Ellie's Eyes Foundation ( https://www.throughellieseyes.org/ ). DONATE $5 (aka "buy us a coffee/hot cocoa") to support the continued production of these stories. We appreciate all the help toward production and hosting costs.  Or if you want to purchase an "Always a Part of Us" Legacy Gift for $20, you'll be providing to one of these families that shares their story, full transcriptions, mp3s, and mp4s of the recordings of their baby's birth story and advice episodes for their family history records. You will also get a shout-out on an upcoming episode. Thank you! Donate: https://ko-fi.com/stillapartofus SUBSCRIBE to our YouTube channel for more birth stories from families who have experienced a stillbirth or infant loss. We're grateful that you're part of our community! https://www.youtube.com/stillapartofus SUBSCRIBE to our podcast Still A Part of Us, wherever you find podcasts. Links (some of these links are affiliate links, which means we may get a small commission off your purchase, at no extra cost to you): Website: http://stillapartofus.com/ Grief Support Groups: https://nationalshare.org/ #stillbirthstory #stillborn #stillbornstory #birthstory #infantloss #infantdeath #babydeath #stillmychild #podcast  #birthstories #babyloss #mybabydied #bereavedmother #bereavedfather #infantlossawareness #dadsgrievetoo #mamasgrief #pals #childloss #lifeafterloss #saytheirnames #babylossawareness #breakingthesilence #grievingmom #grievingdad #bereavedparents #pregnancyandinfantlossawarenessmonth

This is part 2 of 2. Winter speaks with Liz about her sweet little Ellie who was diagnosed with Trisomy 18 and was stillborn at 38 weeks 2 days. Liz talks about all the joy they felt when they found out that they were pregnant, but also all the pain they experienced when the tests revealed that there were some major issues.    DONATE $5 (aka "buy us a coffee/hot cocoa") to support the continued production of these stories. We appreciate all the help toward production and hosting costs.  Or if you want to purchase an "Always a Part of Us" Legacy Gift for $20, you'll be providing to one of these families that shares their story, full transcriptions, mp3s, and mp4s of the recordings of their baby's birth story and advice episodes for their family history records. You will also get a shout-out on an upcoming episode. Thank you! Donate: https://ko-fi.com/stillapartofus SUBSCRIBE to our YouTube channel for more birth stories from families who have experienced a stillbirth or infant loss. We're grateful that you're part of our community! https://www.youtube.com/stillapartofus SUBSCRIBE to our podcast Still A Part of Us, wherever you find podcasts. Links (some of these links are affiliate links, which means we may get a small commission off your purchase, at no extra cost to you): Website: http://stillapartofus.com/ Grief Support Groups: https://nationalshare.org/ Mom Music: "Flickering Flame" by Josh Woodward. Free download: http://joshwoodward.com/​​ #stillbirthstory #stillborn #stillbornstory #birthstory #infantloss #infantdeath #babydeath #stillmychild #podcast  #birthstories #babyloss #mybabydied #bereavedmother #bereavedfather #infantlossawareness #dadsgrievetoo #mamasgrief #pals #childloss #lifeafterloss #saytheirnames #babylossawareness #breakingthesilence #grievingmom #grievingdad #bereavedparents #pregnancyandinfantlossawarenessmonth

This is part 1 of 2. Winter speaks with Liz about her sweet little Ellie who was diagnosed with Trisomy 18 and was stillborn at 38 weeks 2 days. Liz talks about all the joy they felt when they found out that they were pregnant, but also all the pain they experienced when the tests revealed that there were some major issues.    DONATE $5 (aka "buy us a coffee/hot cocoa") to support the continued production of these stories. We appreciate all the help toward production and hosting costs.  Or if you want to purchase an "Always a Part of Us" Legacy Gift for $20, you'll be providing to one of these families that shares their story, full transcriptions, mp3s, and mp4s of the recordings of their baby's birth story and advice episodes for their family history records. You will also get a shout-out on an upcoming episode. Thank you! Donate: https://ko-fi.com/stillapartofus SUBSCRIBE to our YouTube channel for more birth stories from families who have experienced a stillbirth or infant loss. We're grateful that you're part of our community! https://www.youtube.com/stillapartofus SUBSCRIBE to our podcast Still A Part of Us, wherever you find podcasts. Links (some of these links are affiliate links, which means we may get a small commission off your purchase, at no extra cost to you): Website: http://stillapartofus.com/ Grief Support Groups: https://nationalshare.org/ Mom Music: "Flickering Flame" by Josh Woodward. Free download: http://joshwoodward.com/​​ #stillbirthstory #stillborn #stillbornstory #birthstory #infantloss #infantdeath #babydeath #stillmychild #podcast  #birthstories #babyloss #mybabydied #bereavedmother #bereavedfather #infantlossawareness #dadsgrievetoo #mamasgrief #pals #childloss #lifeafterloss #saytheirnames #babylossawareness #breakingthesilence #grievingmom #grievingdad #bereavedparents #pregnancyandinfantlossawarenessmonth

Society underestimates people with Down's. In this special series devoted to widening our circle of empathy for people who often feel marginalized or misunderstood, watch this heart-warming episode featuring George Webster, the first person with Down Syndrome to become a BBC presenter.As a BAFTA-winning TV host of CBeebies, George has been an inclusion trailblazer who has inspired millions. He shares how he overcame communication challenges, why he's written three books, and helps us transcend dated stereotypes about Trisomy 21.00:00 Preview01:16 Introduction 02:26 About George Webster04:41 Misconceptions about Down Syndrome07:00 George's communication journey, from Makaton to spoken language09:08 What is special about George's man cave?11:27 Making history as the first CBeebies presenter with Down's15:45 George's books inspire kids to dream big19:31 George and the Mini Dragon23:05 What role does empathy play in George's life?25:17 George's message to people with Down Syndrome32:37 What would George say if the world listened for one minute?37:02 George Webster's Purposeful Empathy storyCONNECT WITH ANITA✩ Email purposefulempathy@gmail.com ✩ Website https://www.anitanowak.com✩ Buy a copy of Purposeful Empathy http://tiny.cc/PurposefulEmpathyCA✩ LinkedIn https://www.linkedin.com/in/anitanowak/✩ Instagram https://tinyurl.com/anitanowakinstagram✩ Podcast Audio https://tinyurl.com/PurposefulEmpathyPodcast✩ Bluesky https://bsky.app/profile/anitanowak.bsky.socialCONNECT WITH GEORGE✩ Instagram https://www.instagram.com/george_webster_actor/?hl=en SHOW NOTES✩ This is Me https://www.booktrust.org.uk/book-recommendations/bookfinder/this-is-me ✩ Why Not? https://www.amazon.co.uk/Why-Not-brilliantly-inspiring-presenter/dp/0702319155 ✩ George and the Mini Dragon https://www.amazon.co.uk/George-Mini-Dragon-CBeebies-Websters/dp/0702337293 Video edited by Jad Misri, Green Horizon Studio

Matt Swaim joins with highlights from tonight's The Journey Home on EWTN! Roxane Salonen visits to discuss her new book about Flannery O'Connor. Plus, Mary Kellett shares how to help families of children with disabilities and shares the story of her child with Trisomy 18...and Gail Buckley-Barringer joins with her scripture verse of the week!

In this week's episode, I'm joined by Cindy Shufflebarger, who shares the story of her daughter, Ashlynn Faith, and how God's immeasurable love met her family in the midst of unimaginable loss. Diagnosed with Trisomy 18, Ashlynn lived for three precious days — days filled with both deep sorrow and sacred joy. Cindy reflects on those moments, the way her faith was reshaped through lament, and how journaling became a lifeline that led to her book Dancing in the Rain: Finding Joy in the Midst of the Storm.We also talk about the Shufflebarger's beautiful ministry, P23 Retreat, which provides grieving parents with a private, prayer-covered space to rest and heal. Through this ministry, couples and singles are able to pause, reflect, and experience the peace of Psalm 23 in their own grief journeys.Here are some of the resources we mention in this episode:P23 Retreat Website: p23retreat.org — Learn more about how to request a retreat, donate a stay, or access the free downloadable resources available there.Free Downloadable Checklist for Grieving Parents — A simple tool to help you communicate your needs and boundaries to family and friends during grief. (Find it under “Resources” on the P23 website.)P23 Retreat on Social Media: Facebook    | Instagram    | LinkedInMy Messy Grief Podcast — Listen on Spotify or watch video episodes on YouTubeCindy's Book: Dancing in the Rain: Finding Joy in the Midst of the Storm — A look at how God brings joy and growth even through the hardest seasons.My Messy Grief Journal — Available on Amazon; a creative, colorful guide filled with prompts and activities to help you process grief in practical, sensory ways.Cindy's story is a powerful reminder that God's love truly has no limits — even in our deepest pain.If this episode encouraged you, please share it withI would love to hear your thoughts on the show. Click here to send me a message! (Though I read every message, I am unable to respond through this format.) ** IMPORTANT** - All views expressed by guests on this podcast are theirs alone, and may not represent the Statement of Faith and Statement of Beliefs of the While We're Waiting ministry. We'd love for you to connect with us here at While We're Waiting! Click HERE to visit our website and learn about our free While We're Waiting Weekends for bereaved parentsClick HERE to learn more about our network of While We're Waiting support groups all across the country. Click HERE to subscribe to our YouTube channelClick HERE to follow our public Facebook pageClick HERE to follow us on Instagram Click HERE to follow us on Twitter Click HERE to make a tax-deductible donation to the While We're Waiting ministryContact Jill by email at: jill@whilewerewaiting.org

In honor of Pregnancy and Infant Loss Awareness Month, TME host Val sits down with her good friend and fellow loss mom Sara Schultz, a mother of four living children and one precious daughter in heaven, Ruby, who was diagnosed with Trisomy 18.Sara shares her family's story with raw honesty and grace, from learning Ruby's diagnosis to the heartbreak of her preterm delivery and passing. Together, we explore what it means to hold both joy and sorrow in motherhood, how grief reshapes a mother's heart, and why connection with other loss moms can bring profound comfort and healing.This episode offers a safe, tender space for any mom navigating pregnancy loss, infant loss, or life after loss. Sara reminds us that even in grief, there is beauty, community, and grace.

In this incredibly personal and moving episode, we sit down with Teejay and Jon, the authors of the gentle children's book Clemence, to share the full, raw story of their daughter, Nadiya. Their journey began with an unexpected connection—a transatlantic online romance between Teejay in Australia and Jon in Canada—that quickly turned into a marriage grounded in a shared life and purpose. With Teejay's extensive background in early childhood development and their experience fostering a young man with Down syndrome, they felt prepared when Nadiya was diagnosed with Trisomy 21 (Down syndrome) early in the pregnancy. However, Nadiya's complications were severe: a complete AVSD (Atrioventricular Septal Defect), a heart condition that made survival a constant battle. Teejay and Jon open up about the grueling reality of Nadiya's three-month, extended NICU stay. They speak candidly about the sheer exhaustion, the mental toll of the incessant alarms and machine noise, and the profound isolation of making life-and-death decisions under unimaginable pressure.  We explore the difficult but necessary truth of grieving alongside a partner who processes loss in a completely different way. Jon, an extrovert, sought normalcy and company, while Teejay, an introvert, needed space and quiet isolation. They explain how establishing mutual respect and seeking professional counseling were the key foundations that saved their marriage during this seismic time. Finally, they share the powerful mission behind their book, Clemence. Written to honor Nadiya's memory, it provides a crucial tool for families, helping them talk to children about baby sibling loss. They reveal plans for a sequel to address the unique grief of the "neglected mourners"—the subsequent children born after a loss who never met their older sibling. This conversation is an essential listen for anyone in the NICU community, processing loss, or seeking resources for pediatric grief support. Note: We recognize this episode addresses Infant and Pregnancy Loss Awareness. We stand with all families who have experienced loss and hope this conversation brings comfort and community. Episode Highlights & Timestamps Time Topic 00:05:48 Nadiya's Diagnosis: Trisomy 21 and the severe complete AVSD Heart Condition. 00:07:07 The NICU Reality: Coping with the three-month extended stay and constant medical crisis. 00:11:05 Profound Kindness: The stranger's DoorDash order that helped them survive the crisis. 00:13:28 Nadiya's Spirit: Her curiosity, determination, and "badass" personality that charmed the nurses. 00:22:10 Grief in Marriage: Navigating different coping styles (Introvert vs. Extrovert) to stay together. 00:24:25 What Helps? The power of presence and what to say (and what NOT to say) to grieving parents. 00:30:46 A Continuing Legacy: Writing the sequel for Clemence to support subsequent siblings. Connect & Resources Connect with Authors Teejay & Jon: You can find their children's grief book, Clemence, available on [Amazon, Barnes & Noble, Indigo (Canada), and all major book retailers]. Support & Grief Resources: For additional support and resources mentioned in the episode, please visit: Canuck Place Children's Hospice  Kids Grief Support (Jessica Correnti)  Support the Host & Show If you found value in this conversation, please check out host Katie Taylor's work and community resources: Join Katie Taylor's Substack for in-depth insights and articles: Join here Find community and support with the SupportSpot App (a helpful resource for organizing and receiving support during difficult times): Check it out Listen & Subscribe! 

In this profound and grace-filled episode, Marisol Ross opens her heart and shares the story of her second child's birth — a redemptive and holy experience that reshaped her understanding of trust, surrender, and God's design for motherhood.After being induced with her first baby, Marisol longed for a different kind of birth — one marked by peace, trust, and reverence for the way God created her body to work. Her second birth unfolded at home, in the most serene and beautiful setting, surrounded by quiet faith and deep intuition. It was everything she had hoped for — the kind of birth that brings healing and restoration.But soon after her son's arrival, he struggled to breathe. What began as a gentle home birth quickly shifted as they transferred to the NICU, where Marisol and her husband learned that their son had a rare genetic condition called Trisomy 18. Doctors told them they might only have a few weeks with him. Yet, in God's goodness, their son continues to thrive — now ten months old and full of life, light, and purpose.Marisol's journey is one of redemption and revelation — a testimony of trusting in God's perfect design, listening to a mother's intuition, and parenting with eternity in mind. Her story reminds us that even when the path looks nothing like we imagined, the Holy Spirit is near in every breath, guiding us through both the beauty and the breaking.This conversation is a tender invitation to see birth as sacred, to trust that redemption is possible even after disappointment, and to believe that every life — no matter how brief or unexpected — carries eternal weight and holy purpose.Marisol's InstagramConnect:Email us to say hi: ⁠holywildbirth@gmail.com⁠Put in a request for future topics and/or submit a question for future Q&A episodes: ⁠Fill out the form⁠Apply to tell your birth story on the podcast: ⁠Holy Wild Birth Podcast : Guest Application⁠Hang out with us and other Holy Wild Women in our private community (off Facebook): ⁠Rooted in Eden PMA⁠Become a holy, wild birthkeeper with us inside ⁠Hearthmother Journey⁠From Lauren:⁠Instagram⁠Midwifery consults: Email  ⁠rootedinedenpma@gmail.com⁠From Brooke:⁠Instagram⁠⁠Trust God, Trust Birth Workshop⁠ - a 5-part high-level roadmap to a confident home birth (pay what you can)⁠Faith-Filled Home Birth Workshop ⁠- a free, 3-part video series delivered to your inbox⁠Embrace Birth Journey ⁠- comprehensive and holistic faith-based home birth preparation (courses + private community)Intro and Outra Music Credit -Betty Dear By ⁠Blue Dot Sessions⁠ is licensed under a ⁠Creative Commons License⁠.

In this episode of The Worst Girl Gang Ever, Sera and Corby share their heart-breaking journey through infertility, miscarriage, and the devastating loss of their baby girl, Tia, to Edwards Syndrome (Trisomy 18).They open up about:Living with PCOS, infertility, and fertility treatmentReceiving a Trisomy 18 / Edwards Syndrome diagnosis during pregnancyFacing the impossible decision between termination for medical reasons (TFMR) or waiting for nature to decideThe emotional impact of stillbirth and baby loss on both parentsSupporting older children through sibling griefReturning to work after baby loss and the urgent need for better workplace baby loss policiesHow families, schools, and employers can support grieving parentsThe healing power of peer support, counselling, and remembering your baby's name and legacySera and Corby's story is raw, honest, and full of love for their daughter, Tia. By speaking out, they are breaking the silence around miscarriage, stillbirth, and baby loss — and helping other families feel less alone.Whether you've experienced miscarriage, TFMR, infertility, or are supporting someone through loss, this episode offers compassion, understanding, and solidarity.About The Worst Girl Gang EverThe Worst Girl Gang Ever is a real, honest, and emotive podcast that covers the heartbreaking subject of miscarriage, infertility, and baby loss. Expect raw conversations about unspoken experiences, hosted by TWGGE founders Bex Gunn and Laura Buckingham. This show aims to break the silence and open dialogue around miscarriage and pregnancy loss. No more shame, no more taboo—let's change the narrative for future generations.Support and Resources:Access The WarriorshipThe Warriorship is our free peer to peer membership platform, connecting you with others who ‘just get it' through whats app groups, online drop in sessions, a book club, creative workshops and informative webinars. Join now and instantly connect with others who understand the challenges you face.⁠⁠⁠⁠https://theworstgirlgangever.co.uk/membership/ ⁠⁠Our bookWe are here to tell you that you are entitled to grieve, and that your grief is not disproportionate to your loss. We are here to open up the dialogue around miscarriage, so we don't perpetuate the shame, judgement and isolation so many of us feel following pregnancy loss. We are here to equip you with knowledge, tools and guidance to support and help you in whatever way you need.⁠⁠https://www.amazon.co.uk/gp/aw/d/0008524998/ref=tmm_pap_swatch_0?ie=UTF8&⁠⁠

Down syndrome, also known as Trisomy 21, is a common genetic condition affecting roughly 1 in 700 live births in the United States. A recent study that came out in February 2025 that studied skin cells from an individual with Down syndrome to determine if it was possible to genetically engineer the extra chromosome out of the DNA. This study's aim was to see if it was possible to use CRISPR-CAS9 (a technology used to modify genetic code and expression), to be able to completely knock out a chromosome. The reason these researchers used the DNA from an individual with Down syndrome was because the third chromosome is a clear marker that they can see easily to determine if they were successful or not. However, one Press Release article covering this research wrote a piece that incorrectly frames the study as a possible way to "cure" Down syndrome, which is not at all what the researchers were attempting to do. This week, Dr. Jonathan Karp and student producer Kaya Basatemur go through the details of this study, what the scientists' goals were, and why the Press Release article did not accurately describe anything that the researchers did. Tune in to find out more about this interesting study, possible future research, and practical uses of CRISPR-CAS9 genome editing technology!

In this episode of The Worst Girl Gang Ever, Sera and Corby share their heartbreaking journey through infertility, miscarriage, and the devastating loss of their baby girl, Tia, to Edwards Syndrome (Trisomy 18). They open up about: Living with PCOS, infertility, and fertility treatment Receiving a Trisomy 18 / Edwards Syndrome diagnosis during pregnancy Facing the impossible decision between termination for medical reasons (TFMR) or waiting for nature to decide The emotional impact of stillbirth and baby loss on both parents Supporting older children through sibling grief Returning to work after baby loss and the urgent need for better workplace baby loss policies How families, schools, and employers can support grieving parents The healing power of peer support, counselling, and remembering your baby's name and legacy Sera and Corby's story is raw, honest, and full of love for their daughter, Tia. By speaking out, they are breaking the silence around miscarriage, stillbirth, and baby loss — and helping other families feel less alone. Whether you've experienced miscarriage, TFMR, infertility, or are supporting someone through loss, this episode offers compassion, understanding, and solidarity. About The Worst Girl Gang Ever The Worst Girl Gang Ever is a real, honest, and emotive podcast that covers the heartbreaking subject of miscarriage, infertility, and baby loss. Expect raw conversations about unspoken experiences, hosted by TWGGE founders Bex Gunn and Laura Buckingham. This show aims to break the silence and open dialogue around miscarriage and pregnancy loss. No more shame, no more taboo—let's change the narrative for future generations. Support and Resources: Access The Warriorship The Warriorship is our free peer to peer membership platform, connecting you with others who ‘just get it' through whats app groups, online drop in sessions, a book club, creative workshops and informative webinars. Join now and instantly connect with others who understand the challenges you face.⁠ https://theworstgirlgangever.co.uk/membership/ ⁠ Our book We are here to tell you that you are entitled to grieve, and that your grief is not disproportionate to your loss. We are here to open up the dialogue around miscarriage, so we don't perpetuate the shame, judgement and isolation so many of us feel following pregnancy loss. We are here to equip you with knowledge, tools and guidance to support and help you in whatever way you need. ⁠https://www.amazon.co.uk/gp/aw/d/0008524998/ref=tmm_pap_swatch_0?ie=UTF8&⁠ Learn more about your ad choices. Visit megaphone.fm/adchoices

Trisomy 18, also known sometimes as Edwards syndrome, is often fatal within weeks after a baby is born. But now, parents and doctors are finding ways of getting more time with those children with greater interventions and incredible commitments. Stephanie Sy discussed the difficult ethical questions around it with Dr. Sheri Fink. PBS News is supported by - https://www.pbs.org/newshour/about/funders. Hosted on Acast. See acast.com/privacy

Trisomy 18, also known sometimes as Edwards syndrome, is often fatal within weeks after a baby is born. But now, parents and doctors are finding ways of getting more time with those children with greater interventions and incredible commitments. Stephanie Sy discussed the difficult ethical questions around it with Dr. Sheri Fink. PBS News is supported by - https://www.pbs.org/newshour/about/funders. Hosted on Acast. See acast.com/privacy

In this reposted episode, Courtney shares her journey of receiving her daughter Annie's Trisomy 21 diagnosis, navigating the NICU, and walking through open-heart surgery complicated by pulmonary hypertension. She talks about the power of community, the unexpected strength she discovered in herself, and how vulnerability and advocacy have shaped her motherhood. Courtney reminds us that love, connection, and collective wisdom can carry families through the hardest seasons while celebrating Annie's resilient and joyful spirit. Resources mentioned in this episode: Annie Louise Foundation – A resource hub for parents and caregivers Follow Courtney on Instagram Read Courtney's most recent blog post about how the Annie Louise Foundation helped with Central Texas Flood relief in Kerrville, TX

Dr. Jacqueline Vidosh shares her powerful journey as both an obstetrician and mother to Noah, who has trisomy 18, challenging traditional medical understanding of this condition and providing insights into compassionate patient care. Her story, recently featured in The New York Times, illustrates how medical perspectives on chromosomal conditions can evolve through lived experience, highlighting the spectrum nature of trisomy 18 and the importance of accurate, unbiased counseling.• Receiving the diagnosis during pregnancy and navigating the emotional process when medical training suggested a fatal outcome• Discovering that trisomy 18 exists on a spectrum with possibilities beyond what medical textbooks described• Managing Noah's complex medical needs including ventilator, tracheostomy, and gastrostomy tube while balancing family life• Advocating for appropriate medical interventions by challenging the assumption that care would be "futile"• Celebrating Noah's achievements and joys – his love of music, lights, and his unique ways of communication• Recent medical literature supporting interventions for trisomy 18/13 on a case-by-case basis• Using the SPIKES protocol for delivering difficult news with respect and compassion• Implementing trauma-informed care for families experiencing complicated pregnancies and NICU staysRead more about Noah's story in The New York Times article, available through the free link provided in our show notes.https://www.nytimes.com/2025/07/31/magazine/trisomy-18-edwards-syndrome-baby-treatment-care.html?unlocked_article_code=1.ak8.JRBu.7-qMQhelsVYx&smid=url-share00:00:00 Introduction to Trisomy 18 Discussion00:08:40 Receiving the Diagnosis00:17:45 Challenging Medical Assumptions00:27:30 Noah's Daily Life and Care00:38:20 Joy and Connection with Noah00:47:10 Navigating the Medical System00:54:00 Breaking Difficult News EffectivelyFollow us on Instagram @thinkingaboutobgyn.

It's Friday, August 1st, A.D. 2025. This is The Worldview in 5 Minutes heard on 140 radio stations and at www.TheWorldview.com. I'm Adam McManus. (Adam@TheWorldview.com) By Adam McManus Christians evicted from their homes in Chhattisgarh, India Three years ago, Manu, a 37-year-old day laborer in Chhattisgarh, India, came to faith in Jesus after experiencing a miraculous healing. Then, roughly two months ago, he started to pay a price for his Christian faith, reports International Christian Concern. Manu said, “I was thrown out of my house because I follow Jesus.” He is one of the hundreds of Christians who have been evicted from their homes and banned from their villages in Chhattisgarh because of their faith in Christ. Hindu nationalists, who want India to be a purely Hindu nation, are increasingly forcing Christians to become homeless and destitute. The goal of the violent attacks is to force the believers to return to Hinduism. Manu, his wife, and their two children have taken shelter in a temporary bamboo shed since May 21. He said, “My children are getting sick ever since we moved into this shed. The small bamboo shed does not protect us from rain, wind, and extreme weather conditions. This shed was used as a chicken shed prior to our occupation, with no facilities for people to live.” The persecution didn't end with the family losing their property. Hindu villagers also shunned the family, preventing them from purchasing products from certain vendors and hindering Manu from securing employment. When asked what keeps him from giving up on his faith, Manu explained, “Jesus gave me life, He gave me peace, and I am willing to make any sacrifice and bear all these hardships. I know it's all worth it.” In John 10:10, Jesus said, “I came that they may have life and have it abundantly.” House Speaker: Democrats never mentioned Epstein files during Biden's term Appearing with Family Research Council President Tony Perkins on Saturday's “This Week on Capitol Hill,” House Speaker Mike Johnson explained that the Democrats are using the Epstein files as a wedge issue. JOHNSON: “The Democrats have been engaging in a civil war. They're trying to determine if they're going to go full Marxism, like with [Zohran] Mamdani, their nominee for mayor of New York City, or if they're going to go Marxism Light with their woke progressive nonsense that they tried to hoist upon the people for the last four years. So, they found a wedge issue trying to manufacture some controversy with the so-called Epstein files. Here's the problem they have, Tony, with their hypocrisy. It's quite laughable. “Remember, the Biden Department of Justice had all of these files in their possession for the previous four years. Not one time did [House Minority Leader] Hakeem Jeffries (D-N.Y.) or Ro Khanna (D-Calif.), or Jim McGovern (D-Mass.), or any of the Democrats who made so much noise over the last two weeks, not one time in the last four years that they mention the word Epstein at all. It's nowhere in their social media and their interviews or anything. And now, suddenly, it's the most important thing in the world. “We're not buying it, and I'm not going to allow them to drag the Congress into this. “The House Republicans are 100 percent united and 100 percent consistent, as we have been for many years regarding this matter. We want full transparency, total disclosure of all credible evidence. We want to and we must protect the innocent victims of those unspeakable crimes, trafficking and all the rest that were involved there. But it needs to be done in the right way.” The audacity of the Democrats surprises even House Speaker Johnson. JOHNSON: “They're trying to claim that this is some sort of cover-up. Remember, each of them were involved in orchestrating what was the largest political cover-up and political scandal in the history of the United States. And that was covering up for the rapid mental decline of the previous occupant of the White House. When Joe Biden was no longer fit to serve, they went out and tried to convince us of the opposite -- very, very dangerous stuff. They need to answer for that, and there needs to be a lot of accountability all the way around. And House Republicans are the ones urging that and pushing it along with every tool in our arsenal.” American Academy of Pediatrics says Trisomy 13 and 18 are not 'uniformly lethal' The American Academy of Pediatrics has released new guidance stating that the genetic disorders Trisomy 13 and 18 are not "uniformly lethal" and the practice of promoting abortion and "postnatal comfort care" for all children with the conditions is outdated, reports The Christian Post. The guidance, published July 21, notes the "steady increase in medical and surgical interventions for infants and children with trisomy 13 and 18.” The medical organization described the conditions as "chromosomal syndromes associated with a range of congenital anomalies and universally severe neurodevelopmental impairment." The American Academy of Pediatrics noted that about 12.3 percent of those with Trisomy 18 survive beyond their fifth birthday and 9.7 percent of children with Trisomy 13 survive as well. U.S. divorce and out-of-wedlock births are becoming less common The Institute for Family Studies is reporting that after many decades of increasing divorce, nonmarital childbearing, and children living in broken homes, current statistics show that the trends are either leveling off or reversing, reports The Washington Stand. The group notes that the largest shift has become apparent with divorce. After reaching a peak in the late '70s and early '80s, “the divorce rate has been falling in recent decades,” currently hitting a 50-year low. Divorce is less likely because “marriage has become more selective, with more educated, affluent, and religious couples becoming more likely to put a ring on it than the general population.” The Institute for Family Studies further observed that according to the most recent projections, the risk of first marriages ending in divorce is now around 40 percent, a significant drop from couples who married in the '80s and '90s, of whom 50 percent experienced divorce. Malachi 2:16 says, God “hates divorce.” Another factor contributing to more intact families is that the amount of children being born to unmarried women has leveled off. Children born out of wedlock peaked in 2009 and has plateaued ever since, remaining at roughly 40 percent over the last 15 years. Transgender Lady Liberty stirs debate at Smithsonian And finally, Amy Sherald is a 51-year-old woke artist who became famous for depicting the Statue of Liberty as black and transgender, reports Christian talk show host Todd Starnes. She also created a rendition of the famous World War Two Times Square kiss featuring two homosexual black men. And Sherald earned national acclaim for painting the official portrait of former First Lady Michelle Obama. What an unusual combination – transgender statues, homosexual black men, and Michelle Obama. The National Portrait Gallery alerted the artist that they might remove her painting of “Transgender Lady Liberty” over fears it might anger President Donald Trump. Sherald accused the Smithsonian of censorship and pulled out of the exhibit.  The White House, which believed that the painting all but desecrated one of our most sacred symbols, celebrated the development as a step toward restoring sanity in the taxpayer-funded art world. Starnes concluded, “The only person censoring Sherald's exhibit is in fact Sherald. And Lady Liberty is meant to inspire national unity – not pronoun confusion.” Close And that's The Worldview on this Friday, August 1st, in the year of our Lord 2025. Follow us on X or subscribe for free by Spotify, Amazon Music, or by iTunes or email to our unique Christian newscast at www.TheWorldview.com.  Plus, you can get the Generations app through Google Play or The App Store. I'm Adam McManus (Adam@TheWorldview.com). Seize the day for Jesus Christ.

Edwards syndrome (trisomy 18) affects approximately 1 in 5,000 to 6,000 live births. Patau syndrome (also known as Trisomy 13) is even less common, occurring in about 1 in 8,000 to 12,000 live births. About 20% of cases of Patau syndrome are caused by translocation. On the other hand, approximately 10% of Edwards syndrome cases are caused by a genetic translocation. Both conditions result in a wide range of birth anomalies including the heart, kidneys, and brain as well as cognitive limitations. Both of these conditions are part of maternal cell free fetal DNA testing (NIPTs). Prenatal counseling for expectant parents whose fetus was found to have T13 or T18 once focused exclusively on options for pregnancy termination or postnatal comfort care, on the presumptive basis that all affected infants died. However, examination of contemporary outcomes for these infants suggests that death in the neonatal period is not universal, particularly for infants who receive intensive medical and surgical care after birth. Although severe cognitive and motor impairment and shortened lifespan are anticipated for all survivors, some infants with these disorders live for 1 year or more, and some attain social and interactive milestones, with positive quality of life noted by their caregivers. This has led to newly updated guidance released by the AAP on July 21, 2025. This is a marked shift in counseling for parents of an affected child. Here, we will review what this new guidance is, and what it isn't. Listen in for details.1.https://publications.aap.org/pediatrics/article/doi/10.1542/peds.2025-072719/202649/Guidance-for-Caring-for-Infants-and-Children-With Guidance for Caring for Infants and Children With Trisomy 13 and Trisomy 18: Clinical Report | Pediatrics | American Academy of Pediatrics

Dr. Ruth Brown-Ennis joined the podcast again, this time to discuss the latest research on mental health issues seen in people with mosaic Down syndrome.   Article (https://onlinelibrary.wiley.com/doi/10.1002/ajmg.b.33022) Brown RC, D'Aguilar A, Hurshman Q, NailorZee R, York TP, Capone G, Amstadter AB, Jackson-Cook C. Internalizing Psychiatric Symptoms in People With Mosaicism for Trisomy 21. Am J Med Genet B Neuropsychiatr Genet. 2025 Jan 16:e33022. doi: 10.1002/ajmg.b.33022. Epub ahead of print. PMID: 39821956. International Mosaic Down Syndrome Association https://www.imdsa.org   If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to DownSyndromeCenter@chp.edu. If you would like to partner with the Down Syndrome Center, including this podcast, please visit https://givetochildrens.org/downsyndromecenter. We are thankful for the generous donation from Caring for Kids – The Carrie Martin Fund that provides the funding for the podcast recording equipment and hosting costs for this podcast.  

In this second part of our interview with Sartia Edwards, we continue a conversation about her son Elijah, who lives with Full Trisomy 18, also known as Edwards Syndrome.   Sarita Edwards, MHA is the CEO & President at the E.WE Foundation, a global healthcare advocacy organization for families living with Trisomy 18 (Edwards Syndrome) and other rare diseases. Sarita's son Elijah was diagnosed in utero with Full Trisomy 18 which began her efforts of advocacy and public policy. Sarita is recognized as a 2021 world's top patient expert and social health ambassador. She is an award winning advocate, global speaker, and host of the Being Rare Podcast. As a legislative advocate, Sarita provides insight on policy initiatives within her home state and across the country. Sarita has more than 20 years of professional experience in Healthcare Administration and is a candidate for her Doctorate in Health Science. She holds a Bachelor of Science in Health Science, a Masters in Healthcare Administration, and is a nationally certified Mental Health First Aid Instructor. Sarita lives in North Alabama with her husband Kareem and their five children.   Topics Covered: Navigating medical decision-making and advocating for hope Mental health support for caregivers of medically complex children Public policy changes needed in rare disease healthcare The power of patient-centered storytelling through Sarita's Being Rare Podcast Advice and encouragement for families receiving a Trisomy 18 diagnosis   Hear more from Sarita Edwards on another podcast in the Gene Pool Media, DNA Today Episode #277. Be sure to subscribe to Sarita's own podcast, Being Rare Podcast. Sarita mentioned our Executive Producer Kira Dineen's on Episode #98. She also gave a shout out to Episode #106 exploring sickle cell, especially the misconception of people with sickle cell being drug seekers. Check out E.WE Foundation for all kinds of resources for rare diseases and more.   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. 

Dr Steve and Dr Scott discuss: Taurine and cancer Trisomy 21 prognosis THC and intercourse eradicating HIV with "wake up" mRNA instructions boneriffic truck driving watch the complete video at patreon.com/weirdmedicine Please visit: ⁠⁠⁠simplyherbals.net/cbd-sinus-rinse⁠⁠⁠ (the best he's ever made. Seriously.) ⁠⁠⁠instagram.com/weirdmedicine⁠⁠⁠ ⁠⁠⁠x.com/weirdmedicine⁠⁠⁠ ⁠⁠⁠stuff.doctorsteve.com⁠⁠⁠ (it's back!) ⁠⁠⁠youtube.com/@weirdmedicine ⁠⁠⁠(click JOIN and ACCEPT GIFTED MEMBERSHIPS. Join the "Fluid Family" for live recordings!) ⁠⁠⁠youtube.com/@normalworld ⁠⁠⁠(Check out Dave and crew, and occasionally see your old pal!) GET WETBRAIN: THE GAME OF TROLLS AND LOSERS While they last! A great party game! CHECK OUT THE ROADIE COACH stringed instrument trainer! ⁠⁠⁠roadie.doctorsteve.com⁠⁠⁠ (the greatest gift for a guitarist or bassist! The robotic tuner!) see it here: ⁠⁠⁠stuff.doctorsteve.com/#roadie⁠⁠⁠ Also don't forget: ⁠⁠⁠Cameo.com/weirdmedicine⁠⁠⁠ (Book your old pal right now because he's cheap! "FLUID!") Most importantly! ⁠⁠⁠CHECK US OUT ON PATREON! ⁠⁠⁠ ALL NEW CONTENT! Robert Kelly, Mark Normand, Jim Norton, Gregg Hughes, Anthony Cumia, Joe DeRosa, Pete Davidson, Geno Bisconte, Cassie Black ("Safe Slut"). Stuff you will never hear on the main show ;-) Learn more about your ad choices. Visit podcastchoices.com/adchoices

Welcome to a new season of The Lucky Few Podcast! We're starting off strong with an episode all about… diversity, equity, and inclusion. Because these are more than just buzz words, friends. Let's talk about it:What is DEI? What is it NOT?Recent changes to DEI standards.. have we seen these changes in our own lives?The intersection of race and disabilityWe're also introducing our guest host for the season.. Brandy Coleman! She's an advocate, educator, wife, and mother of seven - including her daughter with Down syndrome! Brandy works with the Down Syndrome Diagnosis Network to make sure all families feel seen, heard, and supported. She's a fierce advocate for BIPOC families and we're SO grateful for her perspective this season. --SHOW NOTESFollow Brandy (@divab78) on Instagram and Tik TokFollow Brandy's Facebook page: “Tiny Treasure's Trisomy 21 And CHD Journey”Learn more about the Down Syndrome Diagnosis NetworkDownload the DSDN appSPONSORS National Down Syndrome SocietyiCanShine ProgramsDown for GreensRods Heroes

In this powerful episode of It Happened To Me, co-hosts Cathy and Beth sit down with Sarita Edwards, an award-winning advocate, rare disease leader, and mother to Elijah, who lives with Full Trisomy 18, also known as Edwards Syndrome.   Sarita Edwards, MHA is the CEO & President at the E.WE Foundation, a global healthcare advocacy organization for families living with Trisomy 18 (Edwards Syndrome) and other rare diseases. Sarita's son Elijah was diagnosed in utero with Full Trisomy 18 which began her efforts of advocacy and public policy. Sarita is recognized as a 2021 world's top patient expert and social health ambassador. She is an award winning advocate, global speaker, and host of the Being Rare Podcast. As a legislative advocate, Sarita provides insight on policy initiatives within her home state and across the country. Sarita has more than 20 years of professional experience in Healthcare Administration and is a candidate for her Doctorate in Health Science. She holds a Bachelor of Science in Health Science, a Masters in Healthcare Administration, and is a nationally certified Mental Health First Aid Instructor. Sarita lives in North Alabama with her husband Kareem and their five children.   Topics Covered: What is Trisomy 18 and how it affects the body Elijah's diagnosis and how it shaped Sarita's life and career The challenges of hearing “incompatible with life” as a parent Misconceptions about children living with Trisomy 18 Elijah's involvement in Special Olympics and celebrating milestones The origin and mission of the E.WE Foundation   Hear more from Sarita Edwards on another podcast in the Gene Pool Media, DNA Today Episode #277. Be sure to subscribe to Sarita's own podcast, Being Rare Podcast. Sarita mentioned our Executive Producer Kira Dineen's on Episode #98. She also gave a shout out to Episode #106 exploring sickle cell, especially the misconception of people with sickle cell being drug seekers. Check out E.WE Foundation for all kinds of resources for rare diseases and more.    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.

Christina's story is about the fierce love that guides us through impossible choices. When she received her baby Oliver's Trisomy 13 diagnosis, she didn't just face a medical decision. She faced a profound act of mothering that would challenge everything she thought she knew about love, protection, and what it means to care for your child.Christina opens her heart about navigating a fatal fetal diagnosis as a first-time mom in Ontario, Canada. Her wisdom about values, language, and the misunderstood reality of TFMR will leave you feeling less alone and more grounded in your own truth.If you've ever struggled with explaining your TFMR decision to others, or if you're searching for that centered knowing Christina has found so early in her grief, this episode is medicine for your heart. Thank you, Christina

Christina's story is about the fierce love that guides us through impossible choices. When she received her baby Oliver's Trisomy 13 diagnosis, she didn't just face a medical decision. She faced a profound act of mothering that would challenge everything she thought she knew about love, protection, and what it means to care for your child.Christina opens her heart about navigating a fatal fetal diagnosis as a first-time mom in Ontario, Canada. Her wisdom about values, language, and the misunderstood reality of TFMR will leave you feeling less alone and more grounded in your own truth.If you've ever struggled with explaining your TFMR decision to others, or if you're searching for that centered knowing Christina has found so early in her grief, this episode is medicine for your heart. Thank you, Christina

If you've ever wondered if this is just how life feels when you don't become a mom, this episode is for you. Maybe your fertility journey ended with heartbreak instead of a baby. Maybe you've been told (by the world, by your inner voice) that life will always feel incomplete, lonely, or second-best now. Maybe you scroll past pregnancy announcements and family vacation photos, not because you're bitter, but because they hurt. And maybe you've started to believe the quiet story that society tells women like us: That life without children will always feel like you're just holding on. But what if that story isn't true? In episode 172 of The “So Now What?” Podcast, Lana shares: The truth about the emotional aftermath of IVF and infertility that no one talks about. Her own story of navigating the grief of a chromosomally abnormal embryo (Trisomy 16) and what came after fertility treatments ended. Why the world's attempts to “fix” you with adoption, donor eggs, or surrogacy often leave you feeling more invisible. How guilt, shame, and comparison can keep you frozen in time, and what it takes to finally move forward. You'll hear how women inside her 12-week coaching program, go from surviving each day to actually loving their lives again. One client shares how she stopped obsessing over what people with kids were doing and started finding confidence, peace, and simple joys in her everyday life. This episode invites you to imagine a summer, and a life, where: You wake up excited for your day, not dreading another reminder of what's missing You reconnect with your body and stop treating it like it failed you You feel connected to your partner again, building a future that feels like yours You finally stop pretending to be okay, and actually are If you're ready to stop surviving and start living a life that feels meaningful and fulfilling—even without the children you always dreamed of—this episode will show you what's possible.

Send us a textIn this episode, I talk with Katelyn—a mom of three kids with different disabilities, including Trisomy 21, Aicardi-Goutieres Syndrome & Autism, whose parenting journey started at just 19. Her story includes foster care, childhood trauma, a cancer diagnosis, and learning how to feel her emotions for the first time as an adult.We talk about what survival mode looked like for her, how therapy (and a really good life coach-turned-therapist) helped her start healing, and the beauty of learning to set boundaries and feel again. There's a lot of laughter, honesty, and even a little discussion about why she wants to throat-punch anyone who says, “God won't give you more than you can handle.”Katelyn's story is raw, real, and full of unexpected wisdom. Whether you're in the thick of it or reflecting from the other side, you'll find something here that resonates.Connect with our Guest, Katelyn Johnson:Instagram FacebookEmail: Katelynmarietheimer@gmail.comGet The Special Needs Mom Survival Pack HEREConnect with Kara, host of The Special Needs Mom Podcast:Instagram: https://www.instagram.com/thespecialneedsmompodcast/Website: https://www.kararyska.com/

In this profoundly moving episode of Ageless Future, Regan Archibald sits down with the energetic and big-hearted Ben Laws, financial entrepreneur and transformational coach, to explore the deeper dimensions of love, loss, and what it means to truly live. Ben shares the heart-wrenching and inspiring journey of his son Benny, who was born with Trisomy 18 and lived just 16 days. Through Benny's story, Ben reveals the immense power of love—how it heals, connects, and transforms. The conversation dives into the emotional frameworks that guide Ben's coaching philosophy, his commitment to living a purpose-filled life, and how he and his wife Jenna turned sorrow into impact by founding the “16 Days” charity. This episode is a raw, real, and life-affirming reflection on choosing to live deeply and love unconditionally.MaxLife Podcast:https://podcasts.apple.com/us/podcast/the-maxlife-podcast-with-ben-laws/id1807089251https://creators.spotify.com/pod/profile/maxlife-with-ben-laws/episodes/8-The-Curiosity-Quest-Creating-Teams-that-Thrive-with-Shannon-Waller-e31im0f#:~:text=Hosted%20by%20Ben%20Laws%2C%20the,moments%20that%20shaped%20their%20success.Social:https://www.youtube.com/@MaxLifeBenLawshttps://www.instagram.com/thebenlaws/https://www.facebook.com/benjamin.lawshttps://www.linkedin.com/in/ben-laws-844b926/

Jim sits down with PGA Tour professional Hayden Springer to discuss his journey through professional golf and the profound impact of his daughter Sage's life on him, his family and others familiar with her life's story. The conversation explores Hayden's development from junior golf in Texas to competing on the PGA Tour and the personal resilience that has shaped his career.Hayden reflects on the lessons learned between his first and second years on tour, including the importance of experience, course management, and short game mastery. He shares stories from his standout moments, including shooting a rare 59 at TPC Deere Run and a recent strong finish at Torrey Pines, and the role that confidence and process have played in his progression.The heart of the episode centers around Sage Springer, Hayden and his wife Emma's daughter born with Trisomy 18. Despite devastating medical predictions, Sage lived for over three years, inspiring countless people with her joy and strength. Hayden opens up about the life lessons, deepened faith, and strengthened family bonds that Sage brought into their lives.The Springers' journey also led them to create the Extra To Love Foundation, which supports families navigating Trisomy 18 and Trisomy 13 diagnoses. Hayden shares how Sage's spirit continues to drive his purpose on and off the course.In Angle of Attack with Andrew Lewis, Andrew & Jim discuss the importance of staying rooted to a "home base", as demonstrated by recent successes from Justin Thomas and Scottie Scheffler.The Driven Golf Podcast is brought to you by FlagBag Golf Company and StrackaLine yardage books. Use code ‘DRIVEN' to receive 20% off your StrackaLine yardage book order or mention ‘Driven Golf' when ordering a FlagBag golf bag to receive a free custom headcover with your order.⁠@flagbaggolf⁠ on InstagramFlagBag Golf: ⁠https://flagbaggolfco.com/⁠StrackaLine: ⁠https://www.strackaline.com⁠Resources:Join the ⁠Driven Golf Podcast Group⁠ on Facebook for more discussions. Subscribe to the Driven Golf Analytics YouTube channel: ⁠Driven Golf Analytics YouTube Channel⁠. And please check out the all-new DRVN.Golf website for all of our content.Check out ⁠Andrew Lewis's YouTube channel⁠ for more content.Guest: Hayden Springer (@haydenspringer14; @extratolove)Host: Jim Colton (@drivengolfanalytics) & Andrew Lewis (@andrewlewisgolf)Producer: Joseph Kay (@joseph_kay)Music: "Extra to Love (Sage's Song)" by DG Beat Labs (@dgbeatlab)

Hey mama! In this short and sweet episode Trish breaks down everything you need to know about second trimester pregnancy testing. Get ready to feel educated, empowered, and like the queen you are as you navigate your pregnancy with confidence.Join the Calm Mama Membership: labornursemama.com/cmsLeave a review and include your Instagram username for a chance to win our monthly raffle!What You'll Learn:Second Trimester Visits: Expect weight checks, blood pressure monitoring, urine tests, and hearing your baby's magical heartbeat with the Doppler. Plus, fundal height measurements to track baby's growth.Fetal Movement: Those fluttery kicks start between 18-22 weeks, signaling your baby's thriving.Multiple Marker Screening (Triple/Quad Screen): Done at 16-18 weeks, this blood test checks for Down Syndrome, Trisomy 18, and neural tube defects. 20-Week Anatomy Scan: The big ultrasound! It measures baby's organs, bones, and more, plus reveals the gender (if you want to know). Be prepared for a long appointment!Glucose Tolerance Test (GTT): Between 24-28 weeks, you'll drink the dreaded glucola to screen for gestational diabetes. STI Screening & Emotional Check-Ins: High-risk mamas may get STI tests, and your provider will check on your mental health. Be honest—there's zero shame in needing support.Walk into every appointment informed and ready to advocate for you and your baby. It's your body, mama!More from this episode:Comment "#second" on any @labor.nurse.mama Instagram post for Second Trimester Prep PackGrab the First Trimester Prep PackGrab the Third Trimester Prep PackListen to Navigating Your 20-Week Anatomy Scan with Confidence | 150Listen to 11 Things to Do During the Second Trimester of Pregnancy | 82Connect with the Gestational Diabetes Nurse 00:53 Second Trimester Overview01:51 Routine Checkups and Measurements03:05 Important Tests and Screenings04:10 Emotional Well-being and Support04:37 The 20-Week Anatomy Scan05:54 Glucose Tolerance Test (GTT)06:40 Gestational Diabetes Management07:53 Empowerment and ResourcesResources: First Trimester Secret Podcast

With the cause for canonization officially open for Sister Clare Crockett, we talk with the postulator for the cause, Sister Kristen Gardner all about the life of this soon-to-be saint. From her amazing conversion back to Christ, her radiant joy and tragic death, and the many possible miracles as millions have been praying for her intercession, Sister Garnder shares intimate never-before-heard details about this beloved sister that she knew personally. Marking Trisomy Awareness Month, we also talk with Beverly Jacobson about her darling daughter Verity who was born with Trisomy-18, and why all life should be protected, especially the most vulnerable. We also hear from our TCA chaplain Msgr. Roger Landry on the witness of St. Joseph as we marked his feast day this week. Catch the show every Saturday at 7amET/5pmET on EWTN radio!

Jennifer discusses her infertility journey, including going through IUI and IVF. She talks about her losses including a blighted ovum, the loss of her daughter who was diagnosed with trisomy 18, and embryo loss. Jennifer also talks about how she worked for Starbucks in order to be able to afford her fertility treatments.

Original Air Date: 03/12/24 We dive deep into the moral implications of prenatal testing, and discuss the heavy decisions expectant parents face when confronted with potential genetic disorders. We hear powerful testimonies - from Nora's choice to celebrate the life of her now-healthy daughter despite medical pressures, to heartfelt confessions about the pain of not acting quickly enough to prevent our loved ones from having abortions. With compassion and conviction, Patrick affirms the intrinsic value of every life, and the importance of providing support and accurate information to those grappling with these profound choices. This hour is a testament to the strength found in informed and caring counsel - a beacon for life in the often stormy seas of uncertainty. Cyrus shares some of the flood of emails coming in from listeners praying for George (who called in the previous hour) *Sophie - I have a good friend who isn't Catholic and they got results that their child might have Trisomy 13 and they might get an abortion. How do I talk to her about that? (04:08) Katie - My friend just went through this same thing. My friend had an abortion and I want to encourage Sophie and everyone else to speak up about this. Marie - My parents were told that I was going to be born with a number of medical problems and I’m now 25-years-old and perfectly healthy. (21:25) Bridget - The one thing that people need to remember is that the abortion is very painful. How do you want that baby to die? (35:24) Nora – I was told my baby girl would have down syndrome and we were encouraged to abort. She was born without down syndrome. (40:05) Can I take communion at the Lutheran church?

Watch The Extended Uncensored Version Of this Episode in The True North Movement https://www.patrickcoffin.media/the-true-north-movement/ In this episode of The Patrick Coffin Show, former presidential candidate, Congressman, and Senator Rick Santorum opens up about his deep Catholic faith and how it shapes his perspective on politics and life. He reflects on the changing ethos of American politics, lamenting the drift away from traditional values and the growing polarization in society.  Santorum emphasizes the importance of protecting the sanctity of life, discussing his pro-life advocacy and his commitment to defending the unborn in a political climate that increasingly challenges these views. A poignant part of the interview focuses on his daughter, Isabella, who was born with Trisomy 18, a life-threatening genetic disorder.  Santorum shares the profound lessons he and his family have learned through her life, underscoring the dignity and value of every person, no matter how vulnerable. This episode pulls back the curtain to show the human and Christian side of a politician known for public verbal fist fights and controversial stances. Topics covered in this episode: Why he got into national politics early and became a Congressman by 32 How his marriage to wife Karen led to a deeper commitment to his Catholic faith The time Donald Trump read Santorum's book “Blue Collar Conservatism” and told him this inspired him to run for President What happens when pro-life purists refuse to accept small victories in the right direction A moving account of losing his son Gabriel, who died in his arms after three hours How his daughter Isabella defied all the odds and thrives after being diagnosed with Trisomy 18. The importance of principles and moral courage in public office Resources mentioned in this episode: Blue Collar Conservatives: Recommitting to an America That Works by Rick Santorum https://amzn.to/48uja9j @RickSantorum on Twitter Patrick Coffin: Website: https://www.patrickcoffin.media/ Twitter: @coffinmedia Facebook: Patrick Coffin Media Insta: @realpatrickcoffin Rumble: The Patrick Coffin Show