Hope for HIE
Hope for HIE
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NSR Research Update: Q&A with Dr. Lemmon & Natalie Field
Dr. Monica Lemmon, Pediatric Neurologist at Duke Health, and Natalie Field, Duke medical student and lead author of a recent NSR study on parents' emotional experiences after neonatal seizures, joined Hope for HIE to share insights from the latest NSR findings on parent well-being and discuss future research aimed at improving resources, resilience, and interventions for families.
Chapters:
00:00-5:08: Introductions and Background
5:09-19:01: NSR Research Review & Updates
19:02-26:05: Future of NSR Work
26:06-29:12: Recommended Resources
Переглядів: 24

Відео

Q&A with Gina Abraham, MS - Hope's Clinical Research Program Manager
Переглядів 5912 годин тому
Meet Gina, Hope's Clinical Research Program Manager, and learn how her work at Hope focuses on bringing meaningful support to our community, specifically through fostering academic and industry partnerships that advance HIE research and care, prioritizing family perspectives and input in studies like COOL PRIME, STAR, and other upcoming trials, and building out our HIE Registry work designed to...
Child Life Q&A: Prepping for an EEG
Переглядів 4019 годин тому
Annie Gunning, Hope for HIE's Certified Child Life Specialist, shows how to use everyday items at home to help your child become comfortable with the EEG process. Chapters: 00:00-2:00: Introductions CCLS Role 2:01-3:58: The “Why” Behind EEG Prep 3:59-21:07 :EEG Demonstration and Debrief 21:08 -24:31: Recommended Resources
Research Recap: Child Neurology Society Conference
Переглядів 4021 годину тому
Research Recap: Child Neurology Society meeting 2024 🧠 Long-term follow up guidelines for HIE 🧠 Long-term parent impact 🧠 School-aged sleep and behavioral issues 🧠 Impact of social determinants of health on brain development 🧠 Holding during cooling 🧠 Mild HIE 🧠 Patient advocacy #HopeforHIE #PatientAdvocacy #HIE #HIEawareness #HypoxicIschemicEncephalopathy #HIEresearch #HopeCore #ChildNeurology...
Understanding Disability and Educational Rights in the US in under 10 minutes
Переглядів 4421 годину тому
Disability and educational rights in the US - complex topic, 10 minutes of attempting to give the highlights about the history of disability and educational rights in the US, funding, parental education programs, different and key parts of IDEA, “states rights” and funding, disparities of access, due process, OSER, OCR, philosophy differences between Early Intervention (0-3) and ages 3-21, teac...
HIE Data Registry
Переглядів 55День тому
Hey! We got a $100,000 grant to build a registry for #HIE! Learn more, get pumped and get ready to get involved!!! First step? Learn more next week at the webinar CPRN is hosting with Dr Danielle Barber! Register at Tinyurl.com/HIEregistrywebinar. Cant make it? Leave your questions in the comments! #HopeforHIE #HIE #HypoxicIschemicEncephalopathy #HIEawareness #HopeCore #HIEresearch #PatientAdvo...
HIE Dads: HIE Peer Perspective Series
Переглядів 15314 днів тому
This panel series brings together committed members of the HIE community, sharing meaningful insights from their journeys as HIE dads. Chapters: 00:00-2:50: Introductions and background 2:51-15:05: Emotional experience of the early days 15:06 - 31:49: Retrospective lessons learned 31:50-41:25: Navigating the transition back to work 41:26-51:59: General advice
HIE & Genetics: Q&A with Dr Steven Lazar and Dr Christian Parobek
Переглядів 11721 день тому
Dr. Christian Parobek, Maternal-Fetal Medicine Genetics Fellow, and Dr. Steven Lazar, Neurologist and Medical Director of the Desmond Clinic at the Baylor College of Medicine, meet with Hope for HIE to discuss the importance of genetic investigation in HIE, how genetic various may impact HIE causation and outcomes, and how these insights may influence care and treatment options. Chapters: 00:00...
Child Life Q&A: Fostering Peer Relationships
Переглядів 10221 день тому
Annie Gunning, Hope for HIE's Certified Child Life Specialist, met with Hope for HIE to talk about how to help your child foster peer relationships. Chapters: 00:00-3:30: Role of a Child Life Specialist 3:31-7:44: Strategies for Fostering Friendships & Connections 7:45-9:33: Building a Support Network & Collaborative Strategies 9:34-13:09: Supporting Siblings & their Friendships 13:10-14:55: Im...
Navigating AAC: HIE Peer Perspective Series
Переглядів 218Місяць тому
Navigating AAC: HIE Peer Perspective Series
Public health interventions that have saved baby brains
Переглядів 48Місяць тому
Public health interventions that have saved baby brains
What is HIE - Hypoxic Ischemic Encephalopathy?
Переглядів 868Місяць тому
What is HIE - Hypoxic Ischemic Encephalopathy?
The state of NICU advocacy for HIE & Full Term Families
Переглядів 166Місяць тому
The state of NICU advocacy for HIE & Full Term Families
New research for HIE funded - congratulations Dr Anani at VUMC!
Переглядів 33Місяць тому
New research for HIE funded - congratulations Dr Anani at VUMC!
Child Life Q&A: Why Sibling Support Matters with Annie Taylor, CCLS, and Annie Gunning, CCLS
Переглядів 68Місяць тому
Child Life Q&A: Why Sibling Support Matters with Annie Taylor, CCLS, and Annie Gunning, CCLS
Navigating Mild Outcomes: HIE Peer Perspective Series
Переглядів 2532 місяці тому
Navigating Mild Outcomes: HIE Peer Perspective Series
Celebrating 10 Years of Hope!
Переглядів 162 місяці тому
Celebrating 10 Years of Hope!
Navigating More Severe Outcomes: HIE Peer Perspective Series
Переглядів 1472 місяці тому
Navigating More Severe Outcomes: HIE Peer Perspective Series
Long Term Cognitive Impacts: Q&A with Dr. Melisa Carrasco McCaul
Переглядів 1932 місяці тому
Long Term Cognitive Impacts: Q&A with Dr. Melisa Carrasco McCaul
Exploring Ethics in Neonatal Clinical Trials: Q&A with Dr. Robert "Skip" Nelson, M.D. Ph.D.
Переглядів 793 місяці тому
Exploring Ethics in Neonatal Clinical Trials: Q&A with Dr. Robert "Skip" Nelson, M.D. Ph.D.
Child Life Q&A: Feeling Connected through Grief
Переглядів 523 місяці тому
Child Life Q&A: Feeling Connected through Grief
Outcomes do not cancel out Trauma
Переглядів 1163 місяці тому
Outcomes do not cancel out Trauma
HIE & Genetics
Переглядів 1063 місяці тому
HIE & Genetics
Navigating Moderate Outcomes: HIE Peer Perspective Series
Переглядів 1144 місяці тому
Navigating Moderate Outcomes: HIE Peer Perspective Series
Life with HIE Comes at You Fast
Переглядів 4094 місяці тому
Life with HIE Comes at You Fast
Become a Peer Support Mentor: Q&A with Haley Thomas, LMSW
Переглядів 244 місяці тому
Become a Peer Support Mentor: Q&A with Haley Thomas, LMSW
Hip surveillance with cerebral palsy and HIE
Переглядів 1084 місяці тому
Hip surveillance with cerebral palsy and HIE
Epilepsy Diagnosis in Childhood after HIE
Переглядів 694 місяці тому
Epilepsy Diagnosis in Childhood after HIE
Learning, Attention, and HIE: HIE Peer Perspectives Series
Переглядів 1224 місяці тому
Learning, Attention, and HIE: HIE Peer Perspectives Series
Exploring HIE and Sleep: Q&A with Dr Renée Shellhaas
Переглядів 1 тис.4 місяці тому
Exploring HIE and Sleep: Q&A with Dr Renée Shellhaas

КОМЕНТАРІ

  • @rahullaskar2363
    @rahullaskar2363 3 дні тому

    We are help less

  • @rahullaskar2363
    @rahullaskar2363 3 дні тому

    Please share what to do??

  • @rahullaskar2363
    @rahullaskar2363 3 дні тому

    How is your baby now??

  • @rahullaskar2363
    @rahullaskar2363 3 дні тому

    Our baby have the same, what to do please help???

  • @MdSohelRanas1
    @MdSohelRanas1 25 днів тому

    Great video💥

  • @amandaboyens
    @amandaboyens 2 місяці тому

    My son is almost six and has Severe HIE. He is doing well for having Severe. He has no physical symptoms, and is just developmentally delayed. Hes about the development of a 4 yr old. Most drs have never seen a case like his (He was without oxygen a LONG time due to Uterine rupture) being diagnosed Severe, and doing as well as he is for his circumstances

  • @besazane-pq7fg
    @besazane-pq7fg 3 місяці тому

    Living with HSV1 & 2 not been able to have a healthy relationship was messing up my life until I natural herbs from #dr_ehbos_herbs

  • @amandaboyens
    @amandaboyens 3 місяці тому

    My son has Severe HIE and is doing well for Severe. Even Drs are baffled that he's Severe

    • @HopeforHIE
      @HopeforHIE 3 місяці тому

      @@amandaboyens So many kids have a better outcome than predicted! We are learning more all the time behind the “why” and the more we know the more others may not have to endure so much with improved outcomes!

  • @nandugeethuv892
    @nandugeethuv892 4 місяці тому

    I am from India how to apply the admission

    • @HopeforHIE
      @HopeforHIE 4 місяці тому

      Go to HIE.Support and you can find links to our resources.

  • @nandugeethuv892
    @nandugeethuv892 4 місяці тому

    My baby has HIE mild to modearate plz help

  • @lauradrake1234
    @lauradrake1234 5 місяців тому

    That Nemo at the start has seen some shit

  • @amandaboyens
    @amandaboyens 5 місяців тому

    I heard with cooling, that it can make MRI appear normal. Just like ice on something swollen helps recuce the inflammation drastically. So my son's dr said studies are now showing you cant see the real extent of damage after cooling

  • @nandugeethuv892
    @nandugeethuv892 5 місяців тому

    Our baby has HIE

  • @NS-lf1ew
    @NS-lf1ew 7 місяців тому

    ❤ Thank you.

    • @HopeforHIE
      @HopeforHIE 7 місяців тому

      Thank you for tuning in!

  • @Blurple143
    @Blurple143 8 місяців тому

    How can we schedule an appointment with Ashley Fielding for PT. My daughter has CP and would like to do DMI therapy with her.

    • @HopeforHIE
      @HopeforHIE 8 місяців тому

      She is a member of our Medical Advisory Board.

  • @bw5475
    @bw5475 9 місяців тому

    Thanks for sharing your story and positivity!😊

  • @shaanadavis8320
    @shaanadavis8320 11 місяців тому

    This is by far THE MOST informative video I’ve watched when it comes to feeding therapy. Thank you so much!!

    • @HopeforHIE
      @HopeforHIE 9 місяців тому

      Thank you so much for the comment and watching!

  • @natiortega3287
    @natiortega3287 Рік тому

    Thank you for having these conversations. My grandson has severe HIE.

    • @HopeforHIE
      @HopeforHIE 9 місяців тому

      We are here for you! We have a wonderful extended family support group over on Facebook, and 1:1 mentoring available for grandparents!

  • @ed8494
    @ed8494 Рік тому

    An MRI is how the brain looks, not how the brain works. Such a great quote!

    • @HopeforHIE
      @HopeforHIE 9 місяців тому

      Thanks for watching!

  • @honeybuzzard2843
    @honeybuzzard2843 Рік тому

    How's Stella now?

    • @HopeforHIE
      @HopeforHIE 9 місяців тому

      Stella is living her best life!

  • @rvl-slide1036
    @rvl-slide1036 Рік тому

    I love you Son

  • @dineshsingla1941
    @dineshsingla1941 Рік тому

    My child is diagnosis with HIE-3. Could you please let me know what I can do minimise the issue?

    • @HopeforHIE
      @HopeforHIE Рік тому

      Are you a member of our support network? We cannot give medical advice, and recommend you join our peer support network - head to HIE.Support to connect in.

  • @natiortega3287
    @natiortega3287 2 роки тому

    Thank you for sharing this information. Its educating us on HIE.

  • @annakristova5317
    @annakristova5317 2 роки тому

    Do you get any benefit for that disabelity or any incom support my son have HIE 2 Stage thanks x praying for you 🙏🏽 he is doing well x

    • @HopeforHIE
      @HopeforHIE 9 місяців тому

      If you would like to connect with our social worker at HIE.Support, she can help you navigate any benefits you may qualify for!

    • @kanizsaharapriya512
      @kanizsaharapriya512 10 днів тому

      How is your baby now? Is he achieve his milestone?

  • @jonathanduke3520
    @jonathanduke3520 2 роки тому

    😄 𝕡𝐫o𝕄o𝔰𝓶

  • @deeppoori9190
    @deeppoori9190 2 роки тому

    Hii sir how to cute in Hie please sir

  • @shreyasrai
    @shreyasrai 2 роки тому

    Why still OB/GYN are not concerned about nuchal cord? In our case we specifically asked about nuchal cord and OB/GYN told it cannot be seen in ultrasound report and it is common and which should not be a much concern if heartbeat of baby is fine and moving. But we ended up with 4 rounds of nuchal cord and moderate HIE.

  • @chetagracious9556
    @chetagracious9556 2 роки тому

    Great and Helpful tips to get rid of infantile spasms by Dr Omar on youtube. Please subscribe to his youtube channel. He got nice meds and it's safe ua-cam.com/video/L_sbqN_My7w/v-deo.html

  • @chetagracious9556
    @chetagracious9556 2 роки тому

    You can get rid of infantile spasms by using Dr Omar special herbs and medication. You can subscribe to his youtube channel by searching Dr Omar meds

  • @jasennabrunelle884
    @jasennabrunelle884 2 роки тому

    ❤️

  • @sophiasofi75
    @sophiasofi75 2 роки тому

    Respect sir/ma'am I am Sushila Chaudhary from Nepal 🇳🇵.Now I'm 29 years old and I have a 3 years old daughter and just yesterday I came to know that she is suffering from HIE. Please suggest me what to do now? How can I take care of her? Still she can't speak, walk or crawl, please suggest me.

    • @ryanneedham7466
      @ryanneedham7466 2 роки тому

      Just do exactly what you are doing because it is working. HIE is a serious condition that can cause children to suffer disabilities. You have done incredibly well so just keep giving her the love and care she needs. Are there any hospitals in Nepal that are knowledgeable about this condition? Sorry my reply is 8 months late I have only just come across this channel myself.

    • @sophiasofi75
      @sophiasofi75 2 роки тому

      @@ryanneedham7466 Thank you soo much for replying and suggestion..now slowly she is a improving herself...still she can't walk or speek but her actions make me understand. In Nepal there is no special hospitals for HIE but some nuerologist suggested for Therapy...

  • @learning-and-fun
    @learning-and-fun 3 роки тому

    Hi,my premature baby had HIE the dr said HIE 1 but as have seen and read HIE GRADE 1 DONT CAUSE SEIZURES and my baby has epilepsy,can you explain please...my baby had HIE GRADE1, PVL, BRAIN BLEEDING LEFT GRADE1 RIGJT GRADE2,SEPSIS KLEBSIELLA BACTERIA NEC...

  • @vanessariley1
    @vanessariley1 3 роки тому

    My son was stage 2 HIE, he walks, plays, says his alphabet ,counts, follow the actions of his nursery rhymes, says up to about 15 words,very energetic, however, he hasn't said mommy or daddy yet and he hardly ever respond to his name. I don't know if there is a speech delay of some sort so I am concern about that.

    • @asifahassan2861
      @asifahassan2861 3 роки тому

      When he hold his neck

    • @HopeforHIE
      @HopeforHIE 3 роки тому

      Speech delays are very common with HIE. Is he in speech therapy?

    • @learning-and-fun
      @learning-and-fun 3 роки тому

      Omg that is so good i have premature baby with HIE as well but she has epilepsy...does your baby has epilepsy

    • @vanessariley1
      @vanessariley1 3 роки тому

      @@learning-and-fun no he doesn't.

    • @vanessariley1
      @vanessariley1 3 роки тому

      @@learning-and-fun he was recently diagnosed with a mild developmental delay where responsive speech is concerned though.

  • @nadiashirazi3925
    @nadiashirazi3925 3 роки тому

    Can spasms comes again after treatment

    • @learning-and-fun
      @learning-and-fun 3 роки тому

      Hi,sory to say it but yes the neurologyst of my daughter said to me that yes they can return back...

  • @vidyashreec.b1310
    @vidyashreec.b1310 3 роки тому

    Which stage of hie was Dylan diagnosed with?

  • @asifahassan7730
    @asifahassan7730 3 роки тому

    When she hold neck

  • @Dhumblemoon
    @Dhumblemoon 3 роки тому

    How's your beautiful baby girl doing, hope all is well, wonderful video, sending love your way

  • @asifahassan7730
    @asifahassan7730 3 роки тому

    What grade of hie

  • @taniac01
    @taniac01 3 роки тому

    Would it be possible to have the link to the recent research published on Artane for dystonia (mentioned around 21:00), please?

  • @selambfkri6476
    @selambfkri6476 3 роки тому

    I wish you all the best!

  • @lindsayvanzandt560
    @lindsayvanzandt560 3 роки тому

    Thanks for this! I'm not a nurse, but I love a bunch of them! As an HIE parent, this is so helpful!

  • @ashokaeroP150
    @ashokaeroP150 3 роки тому

    Hi mam wats the hie stage of ur baby?

  • @lindsayvanzandt560
    @lindsayvanzandt560 3 роки тому

    Thanks for this! Definitely things that have been on my mind recently.

  • @ashokaeroP150
    @ashokaeroP150 3 роки тому

    Happy to see ur son.....may I know the hie grade or stage of ur son mam?