Hope for HIE – Hypoxic Ischemic Encephalopathy Hope for HIE – Hypoxic Ischemic Encephalopathy

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FAMILY STORIES

Our daughter, Aubree, was born on the 16th December at 9.12am. After approximately 14 hours in labour my waters broke which showed thick meconium, my partner (Tom) called for the midwife and before I knew it I was being wheeled down to the labour ward. The CTG was put round me and we were asked ‘who’s cutting the babies cord?’ ‘do you […]

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Today marks 10 years since we stepped out of the NICU after (at that point in time) the most rollercoaster 21 days of our lives and the story really started to unravel. I wanted to write something really eloquent and profound but quite frankly I’m too tired today 🤣 Whatever stage you’re at, its OK to have shitty days, its OK […]

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Eliana Mae was born into this world at 6:38 pm on September 18th 2015. Despite all the odds against her she fought her way through 7 weeks in the NICU. We were never given an official life expectancy lecture, what we were given instead were encouraging words of hope from her neurologist. He informed us that the brain is a magnificent […]

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Following a beautiful, healthy pregnancy, I went into labour on the morning of December 7th, 2019. I woke up at about 5:30 am having some light contractions. I stayed in bed until about 7 am. When we got out of bed, we made raspberry pancakes for breakfast – something I had been craving. Danyel had planned to do his usual […]

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When Scott and I decided to move to Los Angeles over three years ago we weren’t too sure about what to expect. It was scary and unknown. What we found were the some of the best therapeutic & medical resources in the country and a village of other families just like our own. Families who could relate perfectly to our […]

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Seizures have been a concern for much of Lucy’s life. Initially, she was weaned off seizure medication before her first birthday when the seizures she had in the NICU hadn’t returned. That was until one day when then-two-year-old Lucy woke up and her parents knew something wasn’t right, later learning the seizures had returned. In the three years since, the […]

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Thinking of her brother getting frustrated when others couldn’t understand him led a teen in the UK to start her own movement to promote knowledge of sign language. Jade’s little brother, Christian, uses sign language to communicate, and is continuing to build his vocabulary. But the process of learning sign language was difficult and lengthy, and Christian didn’t respond much […]

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Watching her daughter on stage, reciting a poem she wrote, is a memory Karla Contreras will never forget. Karla was surprised when she learned her 8-year-old daughter Elisa, who suffered HIE at birth, would be sharing a poem at her school’s poetry slam. But as soon as she got the note from her daughter’s teacher, Karla knew she wouldn’t miss […]

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When Cooper was born I was a mess and everything was so baby/NICU focused I realized I was neglecting myself greatly. When I got some particularly concerning news one day, I went in to an anxious despair. I wallowed in it for about 24 hours then I gave myself a gift; I’m a very visual person so I visualized a […]

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When we got discharged from the NICU just about seven years ago, I had a million questions. The most burning desire for me was to connect to other families who had gone through what we had just been through… a traumatic birth, hypothermic cooling, scary MRIs and EEGs, tubes and wires, and infinite unknowns ahead of us. I had to […]

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UPCOMING EVENTS

Hustle for Hope 5K Registration Open - February 1 - March 15

Hustle for Hope 5K Registration Now Open! Join us for the second annual Hustle for Hope 5K. Proceeds from the event benefit Hope for HIE, a non-profit organization focused on improving the quality of life for children and families affected by Hypoxic Ischemic Encephalopathy through awareness, education and support. Click here to learn more about Hope for HIE. We chose the virtual […]

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Cerebral Palsy Awareness Month - March 1 - March 31

Join us in the month of March to learn more about the connection between HIE and cerebral palsy.

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HIE Awareness Month - April 1 - April 30

This year, our 2021 HIE Awareness Month theme is TEAM HOPE. We are excited to encourage our global HIE community to share about their teams… each family has their own team they assemble throughout their HIE journey. Whether that is made up of friends and family, neighbors, doctors, nurses, therapists, social workers, teachers, administrators and more, we are all one TEAM HOPE!

#HIE #HIEawareness #HIEawarenessmonth #TeamHope #HopeforHIE 

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HIE Remembrance Day - April 20 - April 20

Each year on April 20th, we recognize, remember, mourn, and honour our HIE children who have passed away. We honor their families and their memories through a worldwide wave of light.

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WELCOME

We are the worldwide voice of families who have children with Hypoxic Ischemic Encephalopathy

We’re the largest collective of HIE help, support, resources, and families in the world, with an incredibly active and engaged community. Hope for HIE is deeply committed to providing comprehensive, personalized support for each family’s journey.

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RESOURCES

We have been scared. We have felt alone. We have felt overwhelmed. Our mission is to improve the quality of life for children and families affected by Hypoxic Ischemic Encephalopathy through awareness, education and support.

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RESEARCH
INQUIRIES

Every day, we work relentlessly to partner with researchers who are working to decrease the incidence of HIE, and improve the quality of life for babies and children who face it. If you are a researcher and would like to partner with our community of over 6,000 families, reach out.

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Hope for HIE’s Board of Directors, Medical Advisory Board, Council of Advisors, and volunteers can provide in-depth professional insight and storytelling on a variety of topics.

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