HIE is Jonah’s primary diagnosis. It stands for lack of oxygen to the brain, which was caused by the umbilical cord being wrapped tightly around his neck at birth.

It’s also a catalyst diagnosis, meaning that a slew of diagnoses can be caused from HIE. Hope for HIE has a ton of great resources so I wanted to share some info they gave about this topic. Jonah has been diagnosed with spasticity (high muscle tone), is gtube dependent, and delayed on head and torso control (but we’re getting there!)

What are the most common diagnoses from HIE?

🔹 Epilepsy: HIE is the leading cause of Neonatal Seizures, the 2nd leading cause of Infantile Spasms, and a leading cause of other common and rare epilepsies such as Lennox Gastaut Syndrome. 

Cerebral Palsy: HIE can lead to conditions such as cerebral palsy, dystonia, spasticity (hypertonia), hypotonia, dyskinesia, chorea, and others which may impact mobility, coordination, and daily function.

🔹 Developmental & Cognitive Challenges: Many children with HIE experience intellectual disabilities, learning differences, speech and language delays, and executive functioning difficulties.

🔹 Medical & Sensory Differences: HIE can affect vision, hearing, feeding, digestion, and sleep, leading to diagnoses like cortical visual impairment (CVI), auditory processing disorders, gastrointestinal issues, and sleep disturbances.

🔹 Loss of Life: In some cases, HIE can be severe enough to result in infant or childhood loss. Families navigating loss from HIE are not alone—there is a strong community of support available.