Natasha's Story

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 have an outfit ready?’ as far as I was aware everything was OK and I was going to have a “normal” delivery. That all changed very quickly… The CTG showed an abnormal heartbeat. The emergency buzzer was pressed. The room filled with consultants and before I knew it I was being rushed down the theatre for a CAT 1 emergency caesarean.

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Learning Disabilities, Attention & Behavioral Challenges in HIE

While epilepsy and cerebral palsy get far more attention as noted outcomes from HIE, the prevalence of learning, attention and behavioral challenges, especially for those who have experienced a more mild outcome from HIE, are a significant burden that need more attention and follow-up care. 

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Brooke Rakes, PhD(c), RN, RNC-NIC joins Medical Advisory Board

Hope for HIE's Board of Directors and Medical Advisory Board is pleased to announce Brooke Rakes, PhD(c), RN, RNC-NIC to an appointment on our Medical Advisory Board.

Brooke brings a wealth of knowledge, passion, and expertise to our MAB and we look forward to her contributions to help us move forward our mission.

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A Decade with HIE: A Mother's Reflection

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.

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I wanted to write something really eloquent and profound but quite frankly I'm too tired today 🤣

 

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Making a medical folder

By Lindsey Garrett

Hudson has seen many, MANY doctors in his 10 months of life. Each appointment we spend a good bit of time going over his history, medications and how he's doing. Because of Hudson's lengthy history and long list of medications, it can be hard to remember everything, especially while trying to hold or entertain him. I've seen where some parents have all of their child's medical info in an app or in a notebook, but I didn't know where to begin or what to include so I just started on Microsoft Word. As I thought of things I would add and update as changes came.

My goal for this folder was to: A, make appointments easier, B, have all the information someone caring for Hudson may need, and C, to have this down just in case something was to happen to me. Let's be real, us special needs moms (and dads) do so many things that go unseen. It becomes second nature, so having this typed out has given me so much peace.

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