As a parent, the months before the birth of a child can be full of wonder, excitement, and apprehension. The health of the mother and child are often on the forefront of the expecting parents. The arrival of a new life includes daydreams of the future journey. For parents of a child with Hypoxic Ischemic Encephalopathy (HIE), the journey can be just as meaningful but extraordinarily challenging.
In approximately 2 to 9 in every 1,000 live births, parents must come to terms with:
“Your newborn has Hypoxic Ischemic Encephalopathy (HIE).” That one sentence is a glimpse into the future, which often raises more questions than it answers.
Hypoxic Ischemic Encephalopathy (HIE) is a neonatal brain injury caused by oxygen deprivation or reduced blood flow to the brain. It can occur before, during, or after the birth process, and can be caused by a variety of complications. Causes include but are not limited to, umbilical cord complications, placental or uterine complications, blood clotting disorders, extremely low maternal blood pressure, trauma during delivery, cardiac arrest, or near SIDS events. There is a wide range of outcomes and severity with HIE. Some examples of HIE outcomes are cerebral palsy and other neuromuscular issues, seizure disorders, difficulty breathing and swallowing, vision and hearing issues, gastrointestinal issues, and cognitive or developmental delays.
HIE impacts the entire family. Family members are caregivers and are essential to managing treatment. In 2011, the non-profit organization Hope for HIE created a private Facebook group for individuals and caregivers in the community to connect, share advice, and support one another. The wisdom shared in these groups offer unparalleled insight into the impact of those living with HIE-related conditions and HIE caregivers.
What if there was a way to harness the conversations taking place between those experts with lived experience in the HIE Community?
In 2019 with cooperation with Hope for HIE, TREND Community analyzed data from their groups to create a report unlike any other. While de-identifying members for anonymity, TREND distilled the words of over 4,600 individuals in over 510,000 comments.
Unpacking a report of over 510,000 comments is daunting. The report describes a lexical (relating to words) analysis; it breaks down statements into burden and management categories based on context. There is a hierarchal organization of terms, and often there is overlap between the usage. While all of this may sound overwhelming and complex, the report relays the data in graph format – making the complex less intimidating to review.
TREND has a history of uncovering new directions and areas of focus. With the help of their data processing engine named “Krystie,” the Prader-Willi syndrome community recognized the correlation between PWS and narcolepsy, leading the community to medications that could provide relief.
The data reveals a need for support for HIE caregivers. The highest number of comments relating disease management were: therapy, feeding tubes, physical therapy, occupational therapy, surgery, and medication. Disease management and disease burden vary from case to case but there are so many common themes.
Caregivers for people with HIE are responsible for navigating countless appointments and treatments. They are looking for a better understanding of the circumstances surrounding the initial brain injury. Many are pushing for answers on how to navigate their post-traumatic stress disorder associated with the diagnosis and subsequent challenges. They are craving answers for early-intervention strategies to decrease disease burden on families.
Caregivers are searching for support. In many ways they have found that support through Hope for HIE. TREND’s report provides invaluable insight into the conversations taking place between the experts on living with and managing conditions related to HIE. There is work to be done helping caregivers map this unique journey, TREND Community is proud to partner with Hope for HIE uncovering solutions.
To view the report please visit here