10 episodes

Just Say HIE is the official podcast of the Hope for HIE foundation, a nonprofit serving the worldwide community of HIE families, whose children have been diagnosed with hypoxic ischemic encephalopathy.

Just Say HIE brings the stories of the HIE community from around the world to you, exploring each unique journey and connection with its own version of HOPE to share. Support this podcast: https://anchor.fm/justsayhie/support

Just Say HIE Hope for HIE

    • Business
    • 5.0 • 5 Ratings

Just Say HIE is the official podcast of the Hope for HIE foundation, a nonprofit serving the worldwide community of HIE families, whose children have been diagnosed with hypoxic ischemic encephalopathy.

Just Say HIE brings the stories of the HIE community from around the world to you, exploring each unique journey and connection with its own version of HOPE to share. Support this podcast: https://anchor.fm/justsayhie/support

    BONUS EPISODE: HIE, Seizures & Epilepsy

    BONUS EPISODE: HIE, Seizures & Epilepsy

    Join us for this BONUS EPISODE, as we bring our Medical Advisory Board educational series to our Just Say HIE podcast. This conversation was previously recorded and aired in April 2021 during HIE Awareness Month. Topics covered include neonatal seizures, the connection of HIE to seizures and epilepsy, what types of epilepsy babies and children with HIE are at risk for, including the discussion on Infantile Spasms, Lennox-Gastaut Syndrome, and Electrical status epilepticus in sleep (ESES). Tips are discussed on how to build productive relationships with your child's neurologist, including developing a proactive plan of how to contact them in case you suspect a seizure or have a concern about a movement.

    We are so grateful to Dr. Hannah Glass and Dr. Renee Shellhaas for sharing their expertise, their dedication to the HIE community in research and in clinical practice, and their involvement in the Medical Advisory Board with Hope for HIE. 

    To learn more about HIE and epilepsy, be sure to visit our blog.


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    Support this podcast: https://anchor.fm/justsayhie/support

    • 52 min
    Giving Hope for the Holidays

    Giving Hope for the Holidays

    Join us as David Ford, president of Hope for HIE's board of directors, shares his HIE story, his calling to give back to Hope for HIE, and encouragement for others to get involved in a myriad of ways as the giving season begins. Learn how to get started with Giving Tuesday, Hope for HIE's 100 for $100 campaign, and the exciting sixth annual Hope for the Holidays giving program benefiting HIE families to improve the quality of life for children and families - now totally over $70,000 of equipment, experiences and journey-lifters for the worldwide HIE community. 




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    Support this podcast: https://anchor.fm/justsayhie/support

    • 33 min
    Connecting Across the Miles - with Julie and Margie

    Connecting Across the Miles - with Julie and Margie

    Join us as we share the stories of Julie Makow and Margie Jones, two HIE moms, who connected through Hope for HIE on the road to kidney transplants for their children. With acute kidney injury and HIE, many children may have impacted kidney function. While Julie and Margie did not leave near each other, through Hope for HIE, they were able to complete the circle of support, for each other and new families. Learn more about some of the plot twists in life, and how tacos with a friend can transform pain into a kindred friendship. 


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    Support this podcast: https://anchor.fm/justsayhie/support

    • 56 min
    HIE from the Neonatologist Perspective

    HIE from the Neonatologist Perspective

    Join us as we turn the tables and interview the hosts of the widely popular INCUBATOR podcast, Dr. Ben Courchia and Dr. Daphna Yasova Barbeau. We were excited to come together to showcase the parent and clinician perspectives in this collaboration, learning how each physician approaches care, communication and connection in the NICU, how they prevent burnout, process difficult cases, and provide hope in the uncertainty of HIE.

    Episode links:

    Incubator Podcast:


    Interview with Betsy Pilon
    Dr. Ben Courchia on Twitter
    Dr. Daphna Yasova Barbeau

    Contact us for questions, ideas or to be a guest - justsayhie@hopeforhie.org


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    Support this podcast: https://anchor.fm/justsayhie/support

    • 51 min
    BONUS EPISODE: Tongue, Lip & Cheek Ties

    BONUS EPISODE: Tongue, Lip & Cheek Ties

    Join Medical Advisory Board members, Nancy Calamusa and Dr. Scott Siegel as they share about the impact of lip and tongue ties on speech, swallowing and feeding, when surgical intervention may be necessary, and why follow up therapies are critical for success. 

    Tongue, lip and cheek ties are a hot topic in parenting groups. There's a lot of misinformation on the potential benefits, impact and drawbacks to getting these types of connective tissues revised. Without proper pre and post-procedure therapy, especially for children with HIE and other children with feeding and swallowing disorders, it can sometimes cause more harm than good.

    Learn from the experts on who may or may not be a good candidate from pediatric feeding and swallowing expert, Nancy Calamusa, MA, CCC-SLP, and pediatric oral-maxillofacial surgeon, and pediatric dentist, Dr. Scott Siegel, who often work in tandem to ensure children can benefit from this procedure. 

    This episode originally aired as a part of Hope for HIE's Medical Advisory Board educational video series on Facebook, which you can view here.

    For more information about Hope for HIE, visit our website.


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    Support this podcast: https://anchor.fm/justsayhie/support

    • 1 hr 3 min
    Connecting with Worldwide Support

    Connecting with Worldwide Support

    Join us as we interview Shiru Wanjiru to learn more about her HIE story and connection, finding support, ideas for advocacy, and the need for collaboration to improve access to equipment in areas of disparity. Learn about the nuances of her journey and the connections that have helped her advocate for cultural change and the reduction of stigma surrounding disability.

    Shiru Wanjiru is an attorney advocate, mother, wife, and resident of Tanzania, where she works closely with marginalized populations. 

    Listen along to learn more about an upcoming project Hope for HIE will be partnering with Shiru on to fulfill some critical needs of her community and families of children with disabilities, her hopes for Malik, and the power of connection in the Hope for HIE community, worldwide.

    To learn more about Shiru's story, click here. 


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    Support this podcast: https://anchor.fm/justsayhie/support

    • 30 min

Customer Reviews

5.0 out of 5
5 Ratings

5 Ratings

mobileuserwhoexpectsbetter ,

Wonderful podcast

Every rare disease should have a podcast. This one is excellent. Well done.

Courben ,

Great podcast!

This podcast is great resource for families but also for clinicians. Keep up the good work!

HappyMom3477 ,

Great content

So helpful to gain these insights into the HIE community.

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