What is H.I.E.?
It stands for hypoxic ischemic encephalopathy. It's a type of brain damage that occurs when an infant's brain does not receive enough oxygen and blood either just before or just after delivery. HIE can also happen after birth due to incidents such as a near drowning or near SIDS event. It is a dysfunction that occurs at birth, and can also impact other organs. Research says that HIE affects 2-3 out of every 1,000 live full term births. The rate in preterm infants can be higher.
HIE is a scary diagnosis for parents, as there can be a wide range of secondary diagnoses caused by the injury. Outcomes for children can range from unaffected to loss of life, and everything in between. Children may need additional supports physically, educationally and emotionally throughout their life.
If your child experiences H.I.E, there is support!
We are honored to have a guest blogger, who bravely shares their personal experience of HIE, and how a small facebook support group has turned into the LARGEST collective of HIE help, support, resource library and HIE families WORLDWIDE! Please read the below inspirational story from HOPE for HIE. (and you can visit their website HERE to learn more. )
""HIE – three little letters that I had never heard before my daughter’s traumatic birth that ended with resuscitation, her first helicopter ride and three weeks in the NICU.
My daughter suffered HIE, or hypoxic ischemic encephalopathy, during birth, meaning her brain was deprived of blood flow and oxygen, resulting in brain injury. The diagnosis was one I had never heard of before, but it happens in two to three per every 1,000 live births worldwide each year. Babies and children can also have an HIE event after birth, such as a near-SIDS event or near drowning or as a result of other medical conditions.
Children with HIE can be affected in a wide range of ways, from unaffected to loss of life. Children who are affected can have secondary diagnoses that include cerebral palsy, epilepsy, developmental delays, microcephaly, feeding challenges, amongst other conditions.
For me, the initial weeks and months after her injury were lonely and terrifying, constantly wondering what my child’s life would look like.
Then, I found Hope for HIE, which at the time was a Facebook group with a few hundred parents of children affected by HIE from around the world. Immediately, I knew I had found my support system, where I could ask questions, vent and feel understood.
Since then, what started as a social media group has become an official 501c3 non-profit that supports more than 5,000 families affected by HIE across the world. That support includes resources for newly diagnosed families while in the NICU, resources for practitioners looking for support for families they are working with, partnerships with researchers, in-person retreats for families and parents to connect, and multiple online groups for families to find the support they need.
Our mission is to find every family affected by HIE and offer them support, in order to ensure no one faces HIE alone. Visit us at hopeforhie.org to learn more!"