Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support

• A Father's Journey Through Loss, Healing, and the Birth of a Rainbow Baby: Jeff's Story

  In this profoundly moving and honest conversation, we sit down with Jeff Loving, a NICU dad, husband, and now an author, who shares the intimate and often unspoken grief experienced by fathers after pregnancy loss. Jeff walks us through the heartbreaking loss of his two sons, Davian and Jadon, the struggle to find empathy and appropriate medical care, and how these experiences ultimately led him and his wife, Cassie, to become fierce advocates for their future family. This episode is a raw look at marriage under immense stress, the importance of empathetic medical staff, and the redemptive joy of welcoming their "double rainbow" daughter, Isla Grace. Jeff also discusses his mission to help other men through their grief by writing his book, Holding Onto the Light. Key Discussion Points & Timestamps Time Topic Key Takeaway 00:06 Meet Jeff Loving: Husband, NICU Dad, and Author Jeff introduces his family, including his dog, Sage, his wife, Cassie, and their NICU "double rainbow" baby girl, Isla Grace, reflecting on five years of marriage and three pregnancies. 01:08 The Loss of Davian (First Pregnancy) Jeff describes the initial shock and excitement of their first pregnancy, the sudden onset of symptoms at 19 weeks, and the devastating choice they faced in the hospital due to an infection: lose the baby, or risk losing both the baby and his wife. 04:55 The Cruel Disconnect of Grief Jeff recounts the soul-crushing moment of holding his son, Davian, as his heartbeat stopped. He shares the struggle of navigating intense grief while the world—and Thanksgiving—kept moving around them. 07:58 Finding Support: The Power of Presence The discussion turns to how his family supported them by simply being present, rather than offering platitudes like "it's God's plan." The importance of showing up for grieving parents is highlighted. 11:21 Empathetic vs. Detached Care Jeff praises the nurses who were a "calming presence in the chaos" and later attended Davian's service. Conversely, he shares a painful anecdote about a male doctor's detached and jovial demeanor, asking if he wanted to cut the cord after the loss. 15:51 What Compassion Looks Like in Care Jeff shares what he wished the doctor had said: "I know this is very hard... just know that my heart breaks for you, and I'm so sorry that you guys are going through this." This is a vital lesson for medical professionals. 16:55 Marriage Under Stress After moving to North Carolina for a fresh start, Jeff discusses how the loss put their marriage under extreme stress—it would either break them or bond them deeper. They emerged stronger. 23:13 The Loss of Jadon (The Second Pregnancy) The traumatic situation repeats almost day-for-day with their second son, Jadon. Jeff details the medical system's failure to provide a cerclage procedure, despite repeated requests, and the resulting emergency. 26:45 The Audacity of Poor Communication Jeff recounts being livid when the doctor who denied them the preventive cerclage entered the room without him present to tell his wife they were losing their baby, and then left without speaking to Jeff. 34:20 The Blessing of Angel the Bereavement Coordinator Jeff shares the incredible support they received from their bereavement coordinator, Angel, who handled every detail from handprints to selecting clothes, even providing a moment of much-needed humor when she accidentally gave Jadon a hilarious nickname. 36:02 Remembrance Toys: Dino Dave and Jucletus The significance of tangible remembrance items, like a weighted dinosaur (Dino Dave) and a heartbeat bear (Jucletus), that allow Isla to connect with her "big brothers." 39:18 "This is Our Double Rainbow Child" Jeff discusses the difficulty of answering "Is this your first?" as a parent of loss, and how he now confidently speaks of Isla as their "double rainbow child." 42:03 A Resource for Fathers of Loss Jeff explains his motivation for writing his book, Holding Onto the Light: A Father's Journey Through Loss and Healing. He notes the lack of resources for grieving men and how he encapsulated real stories into a fictional narrative to help them feel seen and heard. 46:05 The Defining Moment The most powerful feedback: a man who hadn't read a book in a decade finally read Jeff's book after losing his son. 48:52 Where to Find the Book and Connect Jeff shares his book title, where to buy it, and the dedicated email address to build a community of grieving fathers. Action Items & Connect with Jeff Read Jeff's Book: Title: Holding Onto the Light: A Father's Journey Through Loss and Healing Author: J. S. Loving Available: On Amazon (print and Kindle Unlimited). Connect & Share Your Story: Fathers of Loss Email: [email protected] (Jeff's goal is to connect with other fathers and collect stories for a future project). Instagram: @L-O-V-I-J-E-F (L-O-V-I-J-E-F)   When parents feel empowered, everyone wins – kids thrive and the care team excels! Links and Resources: SupportSpot Website Download SupportSpot iOS or Android 85% of users report high satisfaction, appreciating the SupportSpot app's comprehensive resources and user-friendly interface. 92%  of parent users say the SupportSpot app's helped them understand medical procedures and treatment better. 80% of parents believe the SupportSpot app's has contributed to better health outcomes for their child. 73% of parent users believe the SupportSpot app's has made them feel more empowered to advocate for their child in healthcare Learn more here. Meet the host:  Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside. Instagram.com/childlifeoncall   The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child are experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you acknowledge that Child Life On Call and its affiliates are not responsible for any decisions made based on the information provided. Facebook.com/childlifeoncall linkedin.com/in/kfdonovan  

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• Understanding Homocystinuria (HCU): How one Mother Uncovered her Son's Diagnosis

  Melanie, mom to 12-year-old Masen, shares the unexpected path to her son's diagnosis with Homocystinuria (HCU) after a routine eye exam revealed something "off." What followed was months of uncertainty, a rare diagnosis few providers had even heard of, a crash course in low-protein diets and metabolic formulas, and two back-to-back eye surgeries to prevent further damage. With gentleness, honesty, and deep advocacy, Melanie describes how they adjusted as a family, how Masen built resilience, and how finding community changed everything. A story of early detection, parent intuition, and the power of connection. Why this episode matters Rare disease reality: What it feels like to navigate a diagnosis most clinicians have never seen Caregiver intuition: How a parent's sense that "something isn't right" can spark life-saving action Practical communication: Age-appropriate ways to explain health changes, procedures & dietary needs Health equity & systems gaps: When newborn screening misses what should have been caught Hope forward: The resilience of kids—and the strength families build together What You'll Learn Early signs Masen showed (or didn't show) before diagnosis How a routine eye exam led to life-changing discoveries What HCU is, and why newborn screening only catches ~50% of cases How metabolic diets work—and why the formula is so hard for kids Talking to kids about scary changes in simple, honest language Navigating back-to-back eye surgeries How parents balance their own needs while supporting their child Building resilience without expecting perfection The power of community: conferences, meetups, Facebook groups Advocating for improved newborn screening for future families Timestamps 00:00 Meet Melanie & Masen: family intro, life in Vancouver 01:23 Sports, hockey, and life surrounded by nature 01:56 Routine eye exam → the moment everything changed 03:38 The optometrist's concerns & the start of uncertainty 04:01 Google panic, calling providers, needing answers 04:55 Keeping fears private during COVID 07:38 Mother's Day call: the rare diagnosis finally revealed 07:47 What HCU is and why newborn screening misses it 10:45 Treatment basics: low protein & metabolic formula 11:19 Explaining diagnosis to an eight-year-old 13:14 Parenting through fear while staying regulated 14:52 "Eat the prawns in the pantry"—navigating food changes 17:29 Building resilience while validating hard feelings 18:31 Finding community online & through HCU conferences 20:41 Masen meets other kids with HCU 22:33 Advocacy: improving newborn screening across Canada 24:28 Social media vs. real-life progress 24:58 Masen's eye surgeries & long-term vision care 27:46 What parents can request if concerned about HCU 30:22 Trusting your care team & staying curious 30:51 Who Masen is beyond a diagnosis 34:22 Where to learn more about HCU Melanie shares that… "My heart was racing. I knew something was off." "Most doctors have never even heard of HCU." "The formula tastes terrible, but it keeps him healthy." "You can be proud of your child's resilience and still wish they didn't need it." "This should have been caught at birth—we want to change that for future kids." Resources & Links HCU & Metabolic Disorder Communities HCU Network America (Instagram: @hcunetwork_america) CANPKU+ (Instagram: @canadian.pku) SupportSpot App (by Child Life On Call) Procedure guides, coping plans, journals, and parent resources to help families feel prepared and advocate with confidence.  Learn more here. Meet the host:  Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside. Instagram.com/childlifeoncall   The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child are experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you acknowledge that Child Life On Call and its affiliates are not responsible for any decisions made based on the information provided. Facebook.com/childlifeoncall linkedin.com/in/kfdonovan  

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• Autism, Advocacy and the Power of a Medical ID Bracelet

  Tara Cohen opens up about her son Will's autism diagnosis and how it transformed her family and career. From navigating meltdowns to discovering AAC as a communication lifeline, Tara shares her honest reflections on parenting, resilience, and hope. What began as a search for a medical ID bracelet led to a career at Lauren's Hope—where she now helps other families feel safe and supported. This heartfelt episode reminds caregivers that advocacy grows from love and that even small acts of compassion can make a life-changing difference.  Timestamps 00:00 – Introduction 03:10 – Early diagnosis and emotions 07:45 – Advocacy and ESE Pre-K 12:30 – Discovering Lauren's Hope 18:40 – Communication with AAC 25:15 – Managing epilepsy 31:00 – Finding silver linings 37:00 – Advice for caregivers Resources Mentioned Lauren's Hope Medical ID Jewelry  ESE Pre-K (Florida early intervention) Temple Grandin (2010 film) Children's Mercy Kansas City (neurology and epilepsy care) Child Life On Call Resources Level up your parent toolkit with child life–expert guidance: 👉 Get SupportSpot on the App Store Want to hear insights from our host, Katie Taylor, Certified Child Life Specialist? 👉Subscribe to Katie's Substack Interested in being a guest or learning more about the podcast? Email us at [email protected] When parents feel empowered, everyone wins – kids thrive and the care team excels! Links and Resources: SupportSpot Website Download SupportSpot iOS or Android 85% of users report high satisfaction, appreciating the SupportSpot app's comprehensive resources and user-friendly interface. 92%  of parent users say the SupportSpot app's helped them understand medical procedures and treatment better. 80% of parents believe the SupportSpot app's has contributed to better health outcomes for their child. 73% of parent users believe the SupportSpot app's has made them feel more empowered to advocate for their child in healthcare Learn more here. Meet the host:  Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside. Instagram.com/childlifeoncall   The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child are experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you acknowledge that Child Life On Call and its affiliates are not responsible for any decisions made based on the information provided. Facebook.com/childlifeoncall linkedin.com/in/kfdonovan  

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• When Your Baby is Diagnosed with Type 1 Diabetes: Marlee's Story

  "My baby went from fussy to lifeless in hours—by the time we reached the PICU, they said he might have had six hours to live." In this episode, TikTok Influencer and Medical Mom Marlee Brandon, a pediatric speech-language pathologist turned full-time mom, shares the whirlwind diagnosis of her 12-month-old son Bain with Type 1 diabetes and severe DKA, the traumatic hospital stay, and the everyday advocacy that followed. Raw, practical, and deeply hopeful. Why this episode matters Emotional clarity: what a Type 1 diagnosis really feels like in infancy Practical advocacy: scripts, choices, and language that help toddlers cope System gaps: when even major hospitals say "we've never seen this in a baby" Hope forward: raising a confident kid who knows why care matters What You'll Learn Early signs & ER visit: how "ear infection" symptoms masked T1D in a baby DKA in plain language: what "acidic blood" means and how PICU treats it The learning cliff: carb ratios, breastfeeding while dosing insulin, and why it's OK not to "get it" on day one Toddler coping: give choices, narrate care, build independence Rebuilding trust after mistakes: when training/tools aren't perfect Finding your people: groups, podcasts, and creators who answer "what now?" Timestamps 00:00 Meet Marlee (pediatric SLP → motherhood) 01:40 Why speech therapy & pediatrics 03:55 Bain turns one → sudden "ear infection" → nonstop vomiting 06:30 Small-town ER: "He has diabetes" (dismantling stereotypes) 08:35 Life-flight & PICU: severe DKA, hourly sticks, no food for 48 hrs 10:20 Turning the corner: energy returns; the six-hour window 11:22 "I don't understand this"—carb ratios, nursing, overwhelm 13:05 "We've never seen this in a baby" at a major children's hospital 15:23 Tears → handing tasks to partner → first solo shot 17:20 The Chick-fil-A moment: necessity builds confidence 18:44 Finding community: Facebook groups, YouTube, TikTok 19:55 Narrating care for toddlers—SLP tools that build trust & language 21:19 Offering choices: stickers, shot sites, pushing the button 22:53 Caregiver reality: self-care with very young T1D 24:32 Why daycare felt unsafe: syringe mix-ups & trust 25:54 Joy check: rocks, crafts, and a kid excited by everything 27:56 Best resources for newly diagnosed families 29:52 "Diabetes doesn't define your life." Marlee Shares that... "Type 1 isn't about weight or diet—my baby was still nursing." "They told my husband he probably had six hours to live." "I thought I needed nursing school to understand our endo." "I won't chase him with a shot. I explain why—insulin keeps you safe." "You can be anything and do anything…and have diabetes." Resources & Links Support communities Diapers & Diabetes (Facebook group for infants/toddlers with T1D) Juicebox Podcast Related Child Life On Call resources Explaining shots, blood draws and vaccines to kids   SupportSpot App (by Child Life On Call) Procedure guides, coping plans, journals, and parent resources to feel prepared and advocate with confidence 

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• Brain Surgery for Drug-Resistant Epilepsy: Managing Infantile Spasms

  Join us for an incredibly candid and informative conversation with Audrey Vernick, a passionate advocate and the Director of Patient and Family Advocacy for the Pediatric Epilepsy Surgery Alliance. Audrey shares the powerful 21-year journey of her son, Bennett, who suffered a stroke in utero and was later diagnosed with the catastrophic epilepsy known as Infantile Spasms. Audrey recounts the emotional process from the difficult labor and early concerns dismissed as normal reflexes, to the terrifying moment she saw his MRI and realized half of his brain was black due to a massive stroke. This episode is an essential listen for any parent navigating a serious pediatric diagnosis, especially those dealing with seizures. Audrey shares her family's ultimate decision to pursue a hemispherectomy after two years of failed medications, and the immediate, miraculous developmental explosion in her son's language and physical abilities post-surgery. Key Takeaways and Actionable Advice Trust Your Parental Instinct: If you think something is wrong with your child's movements, something probably is. Demand a Specialist: If you suspect Infantile Spasms, go to the ER and demand to speak to a neurologist or epileptologist. Request video EEG monitoring. Video & Log Everything: Record videos of suspicious movements and log details (time, duration, what you observed) to help clinicians with diagnosis and treatment planning. The Difference Between a Consult and Surgery: A surgical consult is not a surgery. Referring for a pre-surgical workup opens up a new toolbox of solutions and gives you access to a world-renowned team of specialists for a more detailed look at your child's case. Drug-Resistant Epilepsy (DRE): Epilepsy is considered DRE if a child has uncontrolled seizures after appropriately failing two seizure medications. This increases the risk of SUDEP (Sudden Unexplained Death due to Epilepsy). Decision-Making: Understanding your partner's decision-making style is crucial when navigating complex medical choices. Guest Information & Resources Guest: Audrey Vernick, Director of Patient and Family Advocacy at the Pediatric Epilepsy Surgery Alliance. Organization: Pediatric Epilepsy Surgery Alliance Website: epilepsysurgeryalliance.org. Resources: Offers a Parent Support Navigator Program (trained peers), financial aid for travel to a Level Four epilepsy center for pre-surgical workups, webinars, and more. Infantile Spasms Resource: Audrey also mentions the Infantile Spasms Action Network for resources on recognizing and acting on infantile spasms.   Time Stamp Description Key Information 00:00:43 Critical Advice: Surgery Consult vs. Surgery Audrey shares the core message that a surgery consult is different than a surgery, and there is no harm in seeking a consultation for any diagnosis. 00:01:54 Bennett's Diagnosis and Surgery Audrey introduces her son, Bennett (21), who had a stroke in utero, infantile spasms, and ultimately a hemispherectomy. 00:04:50 The Early Months: Colic vs. Seizures Audrey describes the first five months, where unusual movements and fussiness were initially dismissed as normal reflexes and colic by her pediatrician. 00:12:08 Emergency EEG & Stroke Discovery The night she called a new neurologist, they were admitted for a 48-hour video EEG monitoring. The next day, an MRI revealed a massive stroke in the right hemisphere. 00:14:50 Infantile Spasms: Recognize the Signs Audrey, as a leader of the PESA, stresses that Infantile Spasms is a medical emergency. She describes the signs: head drop/nod, flexing, and subtle movements that happen in clusters. 00:17:10 Advocacy: How to Get Help Advice for parents: Take videos, take logs, and at the ER, demand to see a neurologist or epileptologist. 00:22:15 The Surgical Seed is Planted Bennett's first neurologist mentioned a hemispherectomy when he was only five months old, which her husband immediately dismissed, but planted a "seed" for future research. 00:24:09 Choosing Surgery and the "Elmo Song" Miracle The family begged for surgery and two days later Bennett had his hemispherectomy. Two weeks later on the plane home, Bennett, whose speech was suppressed, sang the entire Elmo song, signaling the impact the seizures had been having. 00:30:52 Defining Drug-Resistant Epilepsy (DRE) DRE is when a child has seizures after failing two appropriately dosed medications. DRE is harmful to development and carries the highest risk of SUDEP (Sudden Unexplained Death due to Epilepsy). 00:42:55 Final Message: Trust Yourself Audrey's final, powerful advice to parents: You are the expert in your own child; trust yourself and use that expertise as a tool on your journey.   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 Get the SupportSpot App—a helpful tool to support your child through their healthcare journey: Check it out The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child is experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you acknowledge that Child Life On Call and its affiliates are not responsible for any decisions made based on the information provided.  

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