Hydro Heroes Unite

In this final episode of Season One, I bring it home (literally) and share parts of my conversation with my husband Scott as he opens up about his perspective through Angelica’s hydrocephalus and Dandy-Walker diagnosis.Scott opens up about:The shock of receiving a diagnosis during pregnancyNavigating NICU life, Hurricane Maria and unexpected PICU transfersFinding humor in hard places Advocating as a caregiver and trusting your gut (and your partners)How resilience forms slowly, moment by momentThis episode is funny, heartfelt, and deeply hopeful. Sometimes, the most powerful form of resilience is learning to smile, laugh, and eventually dance in the rain.It's a tribute to caregivers, partners, and every family who has ever weathered a storm together.If this season moved you, please share the episode or leave a review to help more hydro families feel seen and supported.Resources: Hydrocephalus Association RAISE Resilience Program: https://www.hydroassoc.org/raise-resilience-program/Caring for the Caregiver: How to Recognize, Prevent, and Manage Burnout: https://www.hydroassoc.org/caring-for-the-caregiver/Support Groups: https://www.hydroassoc.org/find-a-community-network/Mindfulness for Hydrocephalus: Tools to Manage Stress: https://www.hydroassoc.org/mindfulness-for-hydrocephalus/Resource for Parents: https://www.hydroassoc.org/parent-hydrocephalus-resources/Hydrocephalus CONNECT Peer Support: https://www.hydroassoc.org/hydrocephalusconnect-peer-support/Congenital Hydrocephalus: https://www.hydroassoc.org/congenital-hydrocephalus/Easily Explain Hydrocephalus to a Child with Confidence: https://www.hydroassoc.org/how-to-explain-hydrocephalus-to-a-child/Complications of a shunt system: https://www.hydroassoc.org/complications-of-shunt-systems/Shunt Malfunction: Frequently Asked Questions: https://www.hydroassoc.org/shunt-malfunctions-frequently-asked-questions/Your Healthcare Team: https://www.hydroassoc.org/your-healthcare-team-2/Hydrocephalus Resources: https://www.hydroassoc.org/parent-hydrocephalus-resources/WALK to End Hydrocephalus: https://www.hydroassoc.org/find-a-walk-near-you/Learn more about hydrocephalus: https://www.hydroassoc.orgRequest a Hydro Hero shoutout on the show: https://bit.ly/hydroheroform Follow on Instagram: @taishaycameron, @hydroassoc

Today I’ll share parts of my conversation with Dr. Elizabeth McRae, a pediatric psychologist at the University of Alabama, to talk about empowering children with complex medical conditions and supporting the families who care for them.We explore:The difference between pediatric psychologists and neuropsychologistsHow parents can help kids learn to advocate for themselvesThe RAISE program, which helps caregivers build resilience and find balanceWhy self-care and mental health are essential for families raising medically complex kidsResources & Links:Hydrocephalus Association RAISE Resilience Program: https://www.hydroassoc.org/raise-resilience-program/Caring for the Caregiver: How to Recognize, Prevent, and Manage Burnout: https://www.hydroassoc.org/caring-for-the-caregiver/Mindfulness for Hydrocephalus: Tools to Manage Stress: https://www.hydroassoc.org/mindfulness-for-hydrocephalus/Neuropsychology 101: Understanding Cognitive Function in Hydrocephalus: https://www.hydroassoc.org/understanding-cognitive-function-hydrocephalus/Support Groups: https://www.hydroassoc.org/find-a-community-network/HydrocephalusCONNECT Peer Support: https://www.hydroassoc.org/hydrocephalusconnect-peer-support/Easily Explain Hydrocephalus to a Child with Confidence: https://www.hydroassoc.org/how-to-explain-hydrocephalus-to-a-child/Transitioning from Pediatric to Adult Care: https://www.hydroassoc.org/transitioning-from-pediatric-to-adult-care/Timeline for a Successful Transition to Adult Care: https://www.hydroassoc.org/timeline-for-transitioning-to-adult-care/Toolkit for Transitioning Medical Care: https://www.hydroassoc.org/toolkit-transitioning-medical-care/Transitioning to Independence: https://www.hydroassoc.org/transitioning-to-independence/Prescription Management: Helping Your Teen Master It: https://www.hydroassoc.org/teen-prescription-management/Individualized Education Program (IEP): https://www.hydroassoc.org/individualized-education-program/Your Healthcare Team: https://www.hydroassoc.org/your-healthcare-team-2/Complications of a shunt system: https://www.hydroaLearn more about hydrocephalus: https://www.hydroassoc.orgRequest a Hydro Hero shoutout on the show: https://bit.ly/hydroheroform Follow on Instagram: @taishaycameron, @hydroassoc

In this heartfelt and often funny episode of Hydro Heroes Unite, I sit down with Melissa, a fellow NICU mom and twin mom, whose daughter Abagail lives with hydrocephalus, hemiplegia, cortical visual impairment, and epilepsy.Melissa shares her heart and her humor as she reflects on their family’s journey — from the early NICU days to navigating the complexities of hydrocephalus, including challenges many parents don’t expect.We talk about the power of trusting your instincts as a parent, finding silver linings even in tough times, and the huge difference it makes when doctors show humility, empathy, and true partnership.Melissa has been a long-time advocate for the hydrocephalus community, serving for eight years as co-chair of the National Capital WALK to End Hydrocephalus and continuing to champion disability rights and inclusion.Whether you’re a newly diagnosed family or years into this journey, this conversation is a reminder that you’re not alone — and that there’s strength in community, advocacy, and a little bit of humor along the way.Resources:Hydrocephalus in infants and children: https://www.hydroassoc.org/hydrocephalus-in-infants-and-children/Acquired Hydrocephalus: https://www.hydroassoc.org/acquired-hydrocephalus/Shunt System: https://www.hydroassoc.org/shunt-systems/Complications of a Shunt System: https://www.hydroassoc.org/complications-of-shunt-systems/Shunt Malfunction: Frequently Asked Questions: https://www.hydroassoc.org/shunt-malfunctions-frequently-asked-questions/Epilepsy and Hydrocephalus: https://www.hydroassoc.org/epilepsy-and-hydrocephalus/Cerebral/Cortical Visual Impairment (CVI) and Hydrocephalus: https://www.hydroassoc.org/understanding-cvi-and-hydrocephalus/ETV and ETV with CPC: https://www.hydroassoc.org/etv-and-etv-with-cpc/Get Support: https://www.hydroassoc.org/get-support/WALK to End Hydrocephalus: https://www.hydroassoc.org/find-a-walk-near-you/Normal pressure hydrocephalus (NPH): https://www.hydroassoc.org/normal-pressure-hydrocephalus-2/Hydrocephalus Resources: https://www.hydroassoc.org/resources/Learn more about hydrocephalus: https://www.hydroassoc.orgRequest a Hydro Hero shoutout on the show: https://bit.ly/hydroheroform Follow on Instagram: @taishaycameron, @hydroassoc

What every parent needs to know about helping kids with hydrocephalus thrive at home and school. Today’s conversation with neuropsychologist Dr. Jennifer Queally explores the impact of hydrocephalus on learning and development, how parents and schools can collaborate, and the challenges children face in self-advocacy. The conversation also dives into practical strategies for supporting independence, preparing for adulthood, and balancing the realities of parenting a child with a medical condition.Whether you’re new to this journey or years along, you’ll find encouragement, insights, and hope in this discussion.Episode 5 Resources:Breaking Myths About Hydrocephalus: What’s Fact and What’s Fiction?: https://www.hydroassoc.org/breaking-myths-about-hydrocephalus/Types and Causes of Hydrocephalus: https://www.hydroassoc.org/types-and-causes/Grey is the new White? Not in the brain!: https://www.hydroassoc.org/grey-is-the-new-white-not-in-the-brain/As Your Child Grows: https://www.hydroassoc.org/as-your-child-grows/Essential Guide: Developmental Milestones in Hydrocephalus: https://www.hydroassoc.org/developmental-milestones-in-hydrocephalus/Shunt Systems: https://www.hydroassoc.org/shunt-systems/ETV and ETV with CPC: https://www.hydroassoc.org/etv-and-etv-with-cpc/School and Hydrocephalus: https://www.hydroassoc.org/school/High School and Hydrocephalus: https://www.hydroassoc.org/high-school/College and Hydrocephalus: https://www.hydroassoc.org/college/Parent Resources: https://www.hydroassoc.org/parent-hydrocephalus-resources/Transitioning from Pediatric to Adult Care: https://www.hydroassoc.org/transitioning-from-pediatric-to-adult-care/Transitioning to Independence: https://www.hydroassoc.org/transitioning-to-independence/Learn more about hydrocephalus: https://www.hydroassoc.orgRequest a Hydro Hero shoutout on the show: https://bit.ly/hydroheroform Follow on Instagram: @taishaycameron, @hydroassoc

What is hydrocephalus? How is it most commonly treated? And what should families know about living with this complex neurological condition? In this episode we’ll hear from Dr. Ramin Eskandari, a leading neurosurgeon, about the realities of hydrocephalus care.We discuss:What hydrocephalus is and how it affects patientsThe most common treatment options, including shunts and ETVWarning signs of shunt malfunctionsNew research and advances in treatmentThe debate on activity restrictions for patients with hydrocephalusDevelopmental, psychological, and psychiatric concerns for patients and caregiversWhy improving quality of life matters just as much as quantity of lifeWhether you’re newly diagnosed, a longtime caregiver, or simply looking to better understand hydrocephalus, this episode offers clarity, guidance, and hope from one of the field’s most experienced voices.HA Resources:Hydrocephalus in Infants and Children: https://www.hydroassoc.org/hydrocephalus-in-infants-and-children/Shunt Systems: https://www.hydroassoc.org/shunt-systems/Complications of Shunt Systems: https://www.hydroassoc.org/complications-of-shunt-systems/Shunt Malfunctions FAQ: https://www.hydroassoc.org/shunt-malfunctions-frequently-asked-questions/Endoscopic Third Ventriculostomy (ETV): https://www.hydroassoc.org/etv-and-etv-with-cpc/Emerging Technology: https://www.hydroassoc.org/emerging-technology/Newly Diagnosed - Next Steps: https://www.hydroassoc.org/whats-next-newly-diagnosed/Essential Guide: Developmental Milestones in Hydrocephalus: https://www.hydroassoc.org/developmental-milestones-in-hydrocephalus/Individualized Education Program (IEP): https://www.hydroassoc.org/individualized-education-program/Consensus Statement on Physical Activities for Children with Hydrocephalus: https://www.hydroassoc.org/staying-active/#:~:text=Statement on Physical-,Activities,-for Children withStaying Active: https://www.hydroassoc.org/staying-active/Emotional Well-being: https://www.hydroassoc.org/emotional-well-being/RAISE Resilience Program: https://www.hydroassoc.org/raise-resilience-program/Research HA Funds: https://www.hydroassoc.org/research-we-fund/Research Priorities: https://wwLearn more about hydrocephalus: https://www.hydroassoc.orgRequest a Hydro Hero shoutout on the show: https://bit.ly/hydroheroform Follow on Instagram: @taishaycameron, @hydroassoc

Crystal’s story is one of resilience, faith, and hope. After her daughter Natalie was diagnosed with hydrocephalus, additional challenges followed: cerebral palsy, epilepsy, and autism. In this episode, Crystal opens up about walking through the valley of the shadow of death, leaning on her faith, and finding strength as a parent in the most difficult circumstances. We discuss how she and her family faced the fear of having another child, the importance of hope, and what it means to step back and allow our children to struggle in order to discover what they are truly capable of. Relevant resources:Hydrocephalus in Pregnancy Article: https://www.hydroassoc.org/hydrocephalus-in-pregnancy/Shunt Systems Article: https://www.hydroassoc.org/shunt-systems/What to Expect with Hydrocephalus Shunt Surgery Article: https://www.hydroassoc.org/hydrocephalus-shunt-surgery/Shunt Malfunction FAQs Article: https://www.hydroassoc.org/shunt-malfunctions-frequently-asked-questions/Complications of Shunt System Article: https://www.hydroassoc.org/complications-of-shunt-systems/Epilepsy and Hydrocephalus Article: https://www.hydroassoc.org/epilepsy-and-hydrocephalus/Easily Explain Hydrocephalus to a Child with Confidence Article: https://www.hydroassoc.org/how-to-explain-hydrocephalus-to-a-child/Caring for the Caregiver Article: https://www.hydroassoc.org/caring-for-the-caregiver/Search HA's Hydrocephalus Resource Library: https://www.hydroassoc.org/hydrocephalus-library/Parent Resources: https://www.hydroassoc.org/parent-hydrocephalus-resources/Get Support: https://www.hydroassoc.org/get-support/WALK to End Hydrocephalus: https://www.hydroassoc.org/find-a-walk-near-you/Learn more about hydrocephalus: https://www.hydroassoc.orgRequest a Hydro Hero shoutout on the show: https://bit.ly/hydroheroform Follow on Instagram: @taishaycameron, @hydroassoc

In this episode of Hydro Heroes Unite, we head into the NICU with neonatologist Dr. Hallie Morris, who brings both her medical expertise and deep compassion to the conversation.We explore what it really means when a baby is admitted to the NICU - and how, in many ways, the whole family is admitted too. Dr. Morris shares how hydrocephalus is often diagnosed in newborns, how care teams come together, and why supporting caregivers is just as important as supporting the patient.From managing expectations and grieving what you hoped for, to embracing optimism in the unknown, Dr. Morris gives us a clear and heartfelt look into NICU life and the quiet hope it holds.Whether you’re a parent in the NICU now or someone wanting to better understand this part of the journey, this episode offers clarity, compassion, and community.Relevant Resources:Newly Diagnosed Article: https://www.hydroassoc.org/whats-next-newly-diagnosed/Search HA's Hydrocephalus Resource Library: https://www.hydroassoc.org/hydrocephalus-library/Parent Resources: https://www.hydroassoc.org/parent-hydrocephalus-resources/Understanding Hydrocephalus Articles: https://www.hydroassoc.org/understanding-hydrocephalus/ About Hydrocephalus Video: https://www.hydroassoc.org/about-hydrocephalus-video/Your Healthcare Team Article: https://www.hydroassoc.org/your-healthcare-team-2/Coping with Hospital Stays Article: https://www.hydroassoc.org/coping-with-hospital-stays/Caring for the Caregiver Article: https://www.hydroassoc.org/caring-for-the-caregiver/Stories from Parents: https://www.hydroassoc.org/people/i-am-a-parent/ Get Support: https://www.hydroassoc.org/get-support/Hydrocephalus FAQ: https://www.hydroassoc.org/hydrocephalus-frequently-asked-questions/Learn more about hydrocephalus: https://www.hydroassoc.orgRequest a Hydro Hero shoutout on the show: https://bit.ly/hydroheroform Follow on Instagram: @taishaycameron, @hydroassoc

In this first episode of Hydro Heroes Unite, I sit down with Miya — a mother of three whose youngest daughter Mila lives with hydrocephalus and cerebral palsy. Miya opens up about navigating a four-month NICU stay with newborn twins during the pandemic, while also parenting a toddler at home.We explore what survival mode really looks like, what comes after crisis, and how Miya stays grounded in the long game of raising a child with special medical needs. This conversation is raw, real, and incredibly powerful. Topics we cover include:  - NICU life with preemie twins - Balancing home and hospital during COVID - Processing trauma after survival - Self-care, grief, and advocacy - The strength of doing “just one day” at a timeResources: - Hydro Hero Shout-Out Form Resources relevant to today’s conversation curtesy of the Hydrocephalus Association:Shunt Systems Article: https://www.hydroassoc.org/shunt-systems/Shunt Malfunction FAQs Article: https://www.hydroassoc.org/shunt-malfunctions-frequently-asked-questions/Complications of Shunt System Article: https://www.hydroassoc.org/complications-of-shunt-systems/Developing an Emergency Plan for Hydrocephalus Complications Article: https://www.hydroassoc.org/emergency-plan-for-hydrocephalus-complications/Ask the Expert Video: Barometric Pressure https://www.hydroassoc.org/ask-the-expert-video-series-barometric-pressure-and-hydrocephalus/Find a Doctor - HA Physicians' Directory: https://www.hydroassoc.org/physicians-directory/Traveling and Hydrocephalus Article: https://www.hydroassoc.org/traveling-with-hydrocephalus/Download HydroAssist® Mobile Application - https://www.hydroassoc.org/hydroassist/Essential Guide: Developmental Milestones in Hydrocephalus Article: https://www.hydroassoc.org/developmental-milestones-in-hydrocephalus/Your Healthcare Team Article: https://www.hydroassoc.org/your-healthcare-team-2/Search HA's Hydrocephalus Resource Library: https://www.hydroassoc.org/hydrocephalus-library/Parent Resources: https://www.hydroassoc.org/parent-hydrocephalus-resources/Get Support: https://www.hydroassoc.org/get-support/Caring for the Caregiver ArticlLearn more about hydrocephalus: https://www.hydroassoc.orgRequest a Hydro Hero shoutout on the show: https://bit.ly/hydroheroform Follow on Instagram: @taishaycameron, @hydroassoc

Welcome to Hydro Heroes Unite, a new bi-weekly podcast for parents and caregivers raising children with hydrocephalus. I'm your host, Taisha Cameron a fellow hydro hero mama, and in this season, we’re shining a light on the pediatric hydrocephalus journey.Each episode brings you real conversations with other parents and insights from medical professionals who understand the daily challenges and quiet victories of life with hydrocephalus.Our first full episode drops Wednesday, July 23. Subscribe now and join us every other Wednesday as we build a community rooted in stories, support, and solidarity.Created in partnership with the Hydrocephalus Association. Learn more at hydroassoc.org. Learn more about hydrocephalus: https://www.hydroassoc.orgRequest a Hydro Hero shoutout on the show: https://bit.ly/hydroheroform Follow on Instagram: @taishaycameron, @hydroassoc