Born For This Stories

Dr. Johanna & Peter Hartley
  • 5.0 (7)
  • Parenting

Born for This Stories is a healing-centered podcast for parents navigating the unthinkable — from rare birth diagnoses and NICU trauma to holistic recovery and emotional resilience. Rooted in our own family's journey through our son's birth defect, we created this space to tell the stories we couldn't find when we were searching for hope. Each episode offers raw conversations, gentle truths, and holistic insights for families walking medically complex paths — because you deserve to feel seen, supported, and held. This isn't just about trauma. It's about transformation. Welcome to the place where healing begins — and where you'll always remember: You were born for this.

  1. 1d ago

    Losing My Daughter to a Rare Disease: Lisa's Story of Paloma & Pallister-Killian Syndrome

    When Lisa's daughter Paloma was three weeks old, a geneticist walked in with a stack of papers and a diagnosis Lisa had never heard of: Pallister-Killian Syndrome, a rare condition affecting only a few hundred children in the world. In this deeply moving episode of Born For This Stories, Lisa shares Paloma's whole journey — who she was, the fight, and the sudden cardiomyopathy (heart failure) that took her at seven years old, at home, in her mother's arms. Host Dr. Johanna Hartley sits down with Lisa — a mom of four with a master's in early childhood special education — for an honest conversation about raising a medically complex child, fierce parent advocacy, and life after loss. Lisa talks about Paloma's NICU stay, RSV, her G-tube, cortical visual impairment, hearing loss, and low muscle tone; the relief of finding an online community for her rare disease; navigating the Katie Beckett Waiver, Medicaid, and the med waiver waitlist in Florida; and the gift of giving Paloma her own voice through an AAC device. She opens up about pediatric hospice and palliative care, PICC lines, raising her other children with anticipatory grief, and the tender, joy-filled morning Paloma passed. Lisa also shares how she's honoring her daughter through the Paloma Lucia Foundation — donating medical equipment to families, working toward a pediatric respite house in Tampa, and turning grief into support for other medical parents. Please note: this episode includes the loss of a child. Take care of yourself as you listen. In this episode: Paloma's diagnosis with Pallister-Killian Syndrome and life as a medically complex family Becoming a fierce advocate for your child in the medical system Navigating Medicaid, the Katie Beckett Waiver, and Florida's med waiver waitlist Pediatric hospice vs. palliative care — and why they helped Giving a nonverbal child a voice with an AAC device Raising siblings with anticipatory grief Turning loss into legacy through the Paloma Lucia Foundation Connect with Lisa on Instagram @ourlittlesturdy or by email at ourlittlesturdy@gmail.com. Share This Episode If this episode met you where you are, don't keep it to yourself. Someone in your life is sitting in a waiting room right now, googling words she never wanted to learn. Send her this one. Share it to your story, text it to a friend, leave a review — every share puts this in front of one more mama who needs to hear she's not alone. Know Someone With a Story to Tell? We're always looking for parents willing to share their journey — the messy middle, not just the highlight reel. If you or someone you know has walked a path other medical mamas need to hear about, we'd love to have you on the show. Reach out at info@bornforthisstories.com and let's talk. Join HELD HELD is here — empowered guidance for medical mamas who are done blaming themselves and want to feel less alone. Inside, we don't gatekeep information. We talk about what's real and raw, no performing required. Become a founding member now at https://held-mamas-connected.lovable.app/ You were Born for This.

    Losing My Daughter to a Rare Disease: Lisa's Story of Paloma & Pallister-Killian Syndrome

  2. Sep 28

    Life After an MKD Diagnosis: Symptom Management, Flares & Rare Disease Advocacy (Part 2)

    What happens after the diagnosis — when the treatment helps, but it still does not change the disease itself? In Part 2 of Isabella and Gabriella's story, Johanna and Peter continue the conversation around mevalonate kinase deficiency, also known as MKD, and what it looks like to parent a child with an ultra-rare genetic disorder where every fever, cold, virus, or flare can become life-threatening. Isabella shares how her family moved from survival mode into rare disease advocacy by creating Cure MKD, a nonprofit focused on funding research, connecting families, supporting the MKD community, and working toward better treatment options and ultimately a cure. This episode explores the emotional reality of living with a rare disease, the limits of symptom management, the burden parents carry when they know the disease better than many providers, and why families often become the force pushing research forward. This conversation is about acceptance, advocacy, hope, and the impossible balance of protecting your child while still trying to build a life with joy, connection, and purpose. If you are a medical parent navigating rare disease, chronic inflammation, immune dysfunction, genetic disorders, hospitalizations, or the constant fear of the next flare, this episode is a reminder that your story matters — and that even the smallest steps can help move an entire community forward. This is Part 2 of Isabella and Gabriella's story. In this episode – How MKD treatment helps manage inflammation but does not cure the underlying disease – The emotional toll of living with constant infection and flare risk – Learning to balance protection, acceptance, and the reality that not everything can be controlled – Why every rare disease journey is different, even with the same diagnosis – How Isabella and her family moved from survival into advocacy – The founding of Cure MKD and the mission to fund rare disease research – Why rare disease families often have to drive the research forward themselves – The need for funding, patient registries, community calls, and better resources – How rare disease research can impact broader health conditions beyond one diagnosis – Isabella's message about hope, support, grief, and being okay with not being okay Share This Episode If this episode met you where you are, don't keep it to yourself. Someone in your life is sitting in a waiting room right now, googling words she never wanted to learn. Send her this one. Share it to your story, text it to a friend, leave a review — every share puts this in front of one more mama who needs to hear she's not alone. Know Someone With a Story to Tell? We're always looking for parents willing to share their journey — the messy middle, not just the highlight reel. If you or someone you know has walked a path other medical mamas need to hear about, we'd love to have you on the show. Reach out at info@bornforthisstories.com and let's talk. Join HELD HELD is here — empowered guidance for medical mamas who are done blaming themselves and want to feel less alone. Inside, we don't gatekeep information. We talk about what's real and raw, no performing required. Become a founding member now at https://held-mamas-connected.lovable.app/ You were Born for This.

  3. Sep 21

    Premature Birth & Rare Genetic Diagnosis: A Mother's MKD & NICU Story, Part 1

    Imagine your newborn is fighting for her life, but no one can tell you what's wrong... In this episode of Born For This Stories, Johanna and Peter sit down with Isabella, a mother from Brazil living in Switzerland, whose daughter Gabriella was born prematurely and later diagnosed with one of the rarest metabolic diseases in the world: Mevalonate Kinase Deficiency, also known as MKD. What began as an unexpected early birth quickly became a terrifying medical journey through NICU transfers, language barriers, liver inflammation, unanswered questions, rare disease testing, and the emotional weight of hearing that your child may not survive. Isabella shares the early days of Gabriella's life, the signs that something was wrong, and what it felt like to be separated from her newborn while trying to understand a diagnosis with almost no roadmap. This conversation explores rare disease parenting, medical uncertainty, newborn hospitalization, immune system dysfunction, genetic disorders, caregiver trauma, and what happens when parents become the research team because the answers are too rare to find easily. If you are a medical parent navigating the unknown, waiting for answers, living through NICU trauma, or trying to advocate for a child with a rare diagnosis, this episode will remind you that you are not alone. This is Part 1 of Isabella and Gabriella's story. In this episode – Isabella's unexpected premature birth story in Switzerland – Navigating birth and NICU care while her husband was overseas – The first signs that something was wrong with Gabriella's liver – Being transferred to a larger hospital without clear answers – What it feels like when your baby is sick and the diagnosis is still unknown – Language barriers, cultural differences, and medical communication challenges – Receiving a rare genetic diagnosis: mevalonate kinase deficiency, or MKD – How MKD affects the immune system, inflammation, organs, and infection risk – The emotional impact of hearing a devastating prognosis – The isolation and fear of bringing home a medically fragile child Share This Episode If this episode met you where you are, don't keep it to yourself. Someone in your life is sitting in a waiting room right now, googling words she never wanted to learn. Send her this one. Share it to your story, text it to a friend, leave a review — every share puts this in front of one more mama who needs to hear she's not alone. Know Someone With a Story to Tell? We're always looking for parents willing to share their journey — the messy middle, not just the highlight reel. If you or someone you know has walked a path other medical mamas need to hear about, we'd love to have you on the show. Reach out at info@bornforthisstories.com and let's talk. Join HELD HELD is here — empowered guidance for medical mamas who are done blaming themselves and want to feel less alone. Inside, we don't gatekeep information. We talk about what's real and raw, no performing required. Become a founding member now at https://held-mamas-connected.lovable.app/ You were Born for This.

    Premature Birth & Rare Genetic Diagnosis: A Mother's MKD & NICU Story, Part 1

  4. Sep 14

    From Chordoma Diagnosis to Brain Tumor Advocate: Beth Finn's Story of Surgery, Support & Second Opinions

    What happens when the medical diagnosis changes everything — not for your child, but for you? In this episode of Born For This Stories, Johanna and Peter sit down with Beth Finn, a technology executive, brain tumor survivor, advocate, and board member of the National Brain Tumor Society. At just 26 years old, Beth was building her career and living her life when an MRI revealed a rare chordoma pressing against her brainstem. Beth shares what it was like to navigate a rare brain tumor diagnosis as a young adult, lean on her parents and partner for support, seek multiple surgical opinions, and ultimately choose the neurosurgical team she trusted with her life. Her story opens up a powerful conversation about self-advocacy, second opinions, medical decision-making, rare disease support, and the importance of finding doctors who bring both skill and compassion. This episode also explores what it means to survive something life-altering and later turn that experience into purpose. Beth reflects on denial, grief, humor, fear, family support, and how finding the brain tumor community helped her step into advocacy through Team Finspiration and the National Brain Tumor Society. If you or someone you love is navigating a brain tumor diagnosis, rare disease, major surgery, or the uncertainty of choosing the right medical team, this episode is a reminder that you are allowed to ask questions, seek more opinions, and fight for care that feels right. In this episode – Beth's rare chordoma diagnosis at 26 years old – How an MRI revealed a tumor pressing against her brainstem – The importance of second opinions for rare diagnoses and complex surgeries – Choosing a neurosurgeon based on expertise, trust, and bedside manner – How Beth's parents and partner supported her through diagnosis and surgery – Using humor, family, and community to face fear and uncertainty – What recovery looked like after brain surgery – Why patients and families need to feel empowered to advocate for themselves – Beth's journey from denial to brain tumor advocacy – Team Finspiration, the National Brain Tumor Society, and resources for newly diagnosed patients Share This Episode If this episode met you where you are, don't keep it to yourself. Someone in your life is sitting in a waiting room right now, googling words she never wanted to learn. Send her this one. Share it to your story, text it to a friend, leave a review — every share puts this in front of one more mama who needs to hear she's not alone. Know Someone With a Story to Tell? We're always looking for parents willing to share their journey — the messy middle, not just the highlight reel. If you or someone you know has walked a path other medical mamas need to hear about, we'd love to have you on the show. Reach out at info@bornforthisstories.com and let's talk. Join HELD HELD is here — empowered guidance for medical mamas who are done blaming themselves and want to feel less alone. Inside, we don't gatekeep information. We talk about what's real and raw, no performing required. Become a founding member now at https://held-mamas-connected.lovable.app/ You were Born for This.

    From Chordoma Diagnosis to Brain Tumor Advocate: Beth Finn's Story of Surgery, Support & Second Opinions

  5. Sep 7

    Guillain-Barré & Post-Intensive Care Syndrome (PICS): Vanessa's ICU Survivor Story

    What happens when the parent becomes the patient, and the medical journey is no longer happening to your child, but to you? In the Season 3 premiere of Born For This Stories, Johanna and Peter sit down with Vanessa, a speech pathologist, mother, ICU survivor, and author of Speechless. Vanessa shares the life-altering medical crisis that began with what felt like a sudden illness and quickly became a rare neurological diagnosis, hospitalization, life support, tracheostomy, feeding tube, and a long road home. This episode opens a powerful new conversation for the Born For This community: medical trauma does not only happen to children, and survival is not the end of the story. Vanessa shares what it was like to come home after the ICU, unable to drive, work, eat safely, fully care for herself, or mother the way she once had. She also brings awareness to post-intensive care syndrome, PICS, ICU recovery, caregiver burnout, medical PTSD, depression, anxiety, brain fog, and the missing mental health support so many survivors need after discharge. If you are a parent, caregiver, medical professional, ICU survivor, or someone who loves a person recovering from medical trauma, this episode is a deeply important reminder that healing requires more than being kept alive. It requires support, community, compassion, and people who understand what life after survival really feels like. In this episode – Vanessa's sudden illness and rare Guillain-Barré variant diagnosis – What it was like to experience ICU care, life support, tracheostomy, and a feeding tube – The emotional impact of losing her ability to speak as a speech pathologist – Life after the ICU and the reality of post-intensive care syndrome, PICS – Depression, anxiety, insomnia, brain fog, hypervigilance, and medical trauma after discharge – Why survivors and families need mental health support, not just medical equipment – The impact of serious illness on motherhood, marriage, and caregivers – How support groups helped Vanessa feel less alone in recovery – Why medical professionals need more education around medical trauma – Vanessa's book Speechless and her mission to bring hope to ICU survivors and families Share This Episode If this episode met you where you are, don't keep it to yourself. Someone in your life is sitting in a waiting room right now, googling words she never wanted to learn. Send her this one. Share it to your story, text it to a friend, leave a review — every share puts this in front of one more mama who needs to hear she's not alone. Know Someone With a Story to Tell? We're always looking for parents willing to share their journey — the messy middle, not just the highlight reel. If you or someone you know has walked a path other medical mamas need to hear about, we'd love to have you on the show. Reach out at info@bornforthisstories.com and let's talk. Join HELD HELD is here — empowered guidance for medical mamas who are done blaming themselves and want to feel less alone. Inside, we don't gatekeep information. We talk about what's real and raw, no performing required. Become a founding member now at https://held-mamas-connected.lovable.app/ You were Born for This.

    Guillain-Barré & Post-Intensive Care Syndrome (PICS): Vanessa's ICU Survivor Story

  6. Jul 6

    What Nobody Tells Medical Parents About Survival Mode & Burnout (Season 2 Recap)

    Season 2 of Born For This Stories became something bigger than one family's story. It became proof that medical parents everywhere are carrying similar fears, questions, grief, decisions, and hope — even when their children's diagnoses look completely different. In this season finale, Dr. Johanna Hartley reflects on the stories, families, medical conditions, and emotional themes that shaped Season 2. From heart warrior families and juvenile rheumatoid arthritis to limb differences, DeGeorge syndrome, clubfoot, hyperbaric oxygen therapy, caregiver burnout, fight-or-flight, and identity loss after diagnosis, this episode honors the parents who vulnerably shared their stories and the listeners who found themselves inside them. Johanna also shares what Season 2 revealed about the common threads of medical parenting: isolation, decision fatigue, nervous system dysregulation, grief, self-blame, and the deep need for community. This episode is both a recap and a bridge into what's coming next — including HELD, the growing Born For This Stories community, and Season 3. If you are a medical parent, caregiver, medical mama, or family navigating diagnosis, surgery, chronic illness, rare disease, birth defects, or the long emotional aftermath, this episode is a reminder that you are not alone — and this community is only growing. In this episode – A recap of the biggest stories and themes from Season 2 – Honoring families who shared experiences with heart conditions, limb differences, clubfoot, DeGeorge syndrome, juvenile rheumatoid arthritis, and more – Why medical parenting is not about comparing complexity – The emotional toll of caregiver burnout, survival mode, and chronic fight-or-flight – How Season 2 highlighted the need for community and connection – The role of gut health, holistic support, and hyperbaric oxygen therapy in family healing journeys – Why medical parents need support beyond diagnosis and treatment plans – The heart behind HELD and the upcoming online community – What Born For This Stories is building for Season 3 – A reminder that you do not have to carry the waiting room, recovery, or in-between alone Share Your Story & Find Born For This Stories If Season 2 reminded you of your own story — the diagnosis, the waiting room, the research, the recovery, the grief, the hope, or the long quiet afterward — we want you to know there is space for you here. Born For This Stories exists to help medical families feel seen, supported, and connected through every stage of the journey. Share your story at bornforthisstories.com Follow along on Instagram @bornforthisstories Subscribe and leave a review to help more families find this community If you are local to St. Pete, join us for HELD, our free monthly gathering for medical mamas. If you are not local, stay connected for the upcoming online HELD community. Season 2 may be ending, but this movement is still growing. Wherever you are in the journey — diagnosis day, surgery recovery, chronic caregiving, or finding yourself again — you do not have to carry it alone.

    What Nobody Tells Medical Parents About Survival Mode & Burnout (Season 2 Recap)

  7. Jun 22

    Hyperbaric Oxygen Therapy for Kids: What Parents Need to Know

    What if oxygen could support healing in ways most parents are never told about? In this episode of Born For This Stories, Johanna and Peter sit down with Dr. Jason Sonners, doctor of chiropractic, PhD, functional medicine provider, hyperbaric oxygen therapy researcher, and owner of HBOT USA, to talk about one of the therapies that became part of their son's post-surgical healing journey: hyperbaric oxygen therapy. This conversation breaks down hyperbaric oxygen in a way parents can actually understand. What it is, how it works, why pressure and oxygen matter, and how it may support recovery, inflammation, blood vessel growth, cellular energy, immune function, and tissue healing. Dr. Sonners also explains the difference between soft and hard chambers, how to think about home use, safety considerations for children, and what parents should ask before choosing a provider. If you are a parent navigating surgery recovery, birth defects, developmental concerns, chronic illness, brain injury, or simply wondering whether HBOT could be a helpful tool for your child, this episode offers a grounded place to start. In this episode – What hyperbaric oxygen therapy is and how it works – How HBOT may support healing, inflammation, blood flow, and cellular energy – The difference between soft chambers and hard chambers – Why treatment protocols should be individualized – Safety considerations for children, infants, and home use – What parents should ask before choosing an HBOT provider – How HBOT may be used for post-surgical recovery and pediatric healing – Why diagnosis labels do not have to define long-term outcomes Share Your Story & Find Born For This Stories If you are navigating surgery recovery, a diagnosis, developmental concerns, or searching for ways to better support your child's healing, you are not alone. Born For This Stories exists to connect families walking through medical journeys and to share conversations that help parents feel informed, supported, and less isolated. Share your story at bornforthisstories.com Follow along on Instagram @bornforthisstories Subscribe and leave a review to help more families find this community New episodes release every Monday. Wherever you are — researching, recovering, advocating, or rebuilding — you do not have to carry it alone.

    Hyperbaric Oxygen Therapy for Kids: What Parents Need to Know

  8. Jun 8

    The 4 Stages of the Medical Mama Journey: From Survival to Community

    Medical parenting does not come with a roadmap. One day you are surviving the diagnosis, the appointments, the surgeries, the research, and the fear — and somewhere along the way, you realize you do not even know what stage you are in. In this solo episode of Born For This Stories, Dr. Johanna Hartley walks through the emotional stages many medical moms experience while navigating a child's diagnosis, surgery, chronic illness, birth defect, rare condition, or medically complex journey. This is not a checklist or a timeline. It is a mirror for the mom who has been living in survival mode and wondering why she still feels lost, even when life looks like it is moving forward. Johanna breaks down five stages of the medical mama journey: survival, the first exhale, reaching, showing up, and choosing it. From the early days of Googling everything and running on adrenaline to finding community, sharing your story, and learning how to show up for yourself again, this episode gives language to an experience so many caregivers are living but cannot always name. If you are a mom navigating medical parenting, caregiver burnout, decision fatigue, hypervigilance, guilt, or the long quiet after a diagnosis, this episode will help you feel seen — wherever you are in the process. In this episode – The five emotional stages of the medical mama journey – Why survival mode can feel like "fine" when you are in it – The first exhale after a long season of fear or medical crisis – Searching for stories, answers, and community when you feel alone – Moving from what happened to you into what you are doing with it – How sharing your story can help another parent feel less alone – The importance of nervous system regulation and caregiver support – Why healing is not linear and no stage comes with a timeline – Releasing guilt around where you are in the process – The heart behind HELD and the growing Born For This Stories community Share Your Story & Find Born For This Stories If you are navigating a diagnosis, surgery, chronic illness, rare condition, birth defect, or the long emotional aftermath of medical parenting, you are not alone. Born For This Stories exists to help medical families feel seen, supported, and connected through every stage of the journey. Share your story at bornforthistories.com Follow along on Instagram @bornforthistories Subscribe and leave a review to help more families find this community New episodes release every Monday. If you are local to St. Pete, join us for HELD, our free monthly gathering for medical mamas. If you are not local, reach out to get on the waitlist for the upcoming online community. Whatever stage you are in — survival, searching, showing up, or becoming — you do not have to carry it alone.

    The 4 Stages of the Medical Mama Journey: From Survival to Community
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About

Born for This Stories is a healing-centered podcast for parents navigating the unthinkable — from rare birth diagnoses and NICU trauma to holistic recovery and emotional resilience. Rooted in our own family's journey through our son's birth defect, we created this space to tell the stories we couldn't find when we were searching for hope. Each episode offers raw conversations, gentle truths, and holistic insights for families walking medically complex paths — because you deserve to feel seen, supported, and held. This isn't just about trauma. It's about transformation. Welcome to the place where healing begins — and where you'll always remember: You were born for this.

Information

  • Creator
    Dr. Johanna & Peter Hartley
  • Years Active
    2025 - 2026
  • Episodes
    52
  • Rating
    Explicit
  • Copyright
    © 2025
  • Show Website
    Born For This Stories