Together for HIE

03/09/2026

When your baby is in the NICU with a diagnosis of Hypoxic Ischemic Encephalopathy (HIE), seeing monitors and wires attached to your baby’s head can be scary.

One of the most common monitoring tools used in HIE care is an EEG (Electroencephalogram). It is completely painless and non-invasive and monitors electrical brain activity, giving clinicians essential data to:
a) Catch seizures early to determine medical interventions.
b) Monitor brain wave patterns during therapeutic hypothermia (cooling therapy).
c) Track how the brain is responding and recovering over time.

Swipe through to learn more.

02/09/2026

Supporting families navigating a Hypoxic-Ischemic Encephalopathy (HIE) diagnosis requires moving beyond standard NICU assumptions. When healthcare providers adopt inclusive language, prioritize diagnostic clarity, and build pathways to specialized peer networks, families feel truly seen, informed, and supported.

Hope for HIE Foundation - Hypoxic Ischemic Encephalopathy shares valuable insights on supporting families through the journey this .

Read the blog post here: https://tinyurl.com/4mb8467c

September is !

📌 Use inclusive language referring to NICU babies.

Over 50% of all NICU admissions are full term babies. The majority of HIE babies are born at or near term, and traditionally, the messaging surrounding NICU has largely been synonymous with prematurity.

📌 Name the diagnosis.

Neonatal HIE can be complex, but by not naming the diagnosis, families are left without the dedicated information and support they need to feel empowered to best help their children.

📌 Connect families to diagnosis-specific support.

Community is essential, and works hand-in-hand with advocacy and support. Families with HIE often feel alone and othered in the setting and beyond.

📌 We need more treatment options.

There are many in the pipeline, but we definitely need more treatment options for HIE to improve outcomes for babies and children facing HIE.

📌 Prevention is the best cure.

Quality improvement surrounding birth, better imaging, better prenatal care, and prenatal and birth interventions to prevent HIE are necessary to make a significant impact to decrease the incidence of HIE.

Read the blog post ⬇
🔗 https://hopeforhie.org/recognizing-nicu-awareness-month-this-september/

31/08/2026

Navigating a NICU stay after a Hypoxic-Ischemic Encephalopathy (HIE) diagnosis can feel completely overwhelming. From medical jargon to continuous monitoring, it is normal to feel lost, and it is okay if you don't have all the answers now.

Swipe through for some questions that you can ask the NICU care team as you continue to advocate for your child, as well key reminders for you to note beyond the NICU.

27/08/2026

Children who experience Hypoxic-Ischemic Encephalopathy (HIE) may develop secondary microcephaly, where head growth slows down after birth due to brain injury.

While this condition is more common after moderate to severe HIE and often diagnosed within a year, many children still reach meaningful developmental milestones. Interventions like therapeutic hypothermia (cooling therapy) when done within the first six hours after birth, can help reduce severe brain damage.

24/08/2026

When a diagnosis of Hypoxic Ischemic Encephalopathy (HIE) occurs, "wait and see" can be one of the hardest phrases a parent hears. But uncertainty does not mean a lack of direction. When communicated well, it opens the door to realistic, anchored hope.

Hope for HIE Foundation - Hypoxic Ischemic Encephalopathy breaks down actionable ways healthcare teams can navigate uncertainty with clarity and compassion.

Read the primer for clinicians here: https://hopeforhie.org/communicating-uncertainty-in-hie-a-primer-for-clinicians/

20/08/2026

Hypoxic-Ischemic Encephalopathy (HIE) is a type of brain injury caused by a reduction in supply of oxygen or blood flow to the brain.

Hypoxic: Lack of oxygen
Ischemic: Restricted blood flow
Encephalopathy: Affecting brain function

At Together for HIE, we aim to partner with key stakeholders to strengthen health systems, create awareness, and empower families impacted by with the knowledge and support that they deserve.

22/05/2026

Access to resources is essential in the Hypoxic Ischemic Encephalopathy (HIE) journey. Given that is a starter diagnosis, families may face unique challenges as HIE-acquired diagnoses respond differently to therapies and treatments. Drawing from lived experiences and research empowers clinicians and researchers to continually improve care and communities to better support families navigating the HIE journey.

Follow the links below to access valuable HIE resources:

- Hope for HIE Foundation - Hypoxic Ischemic Encephalopathy: https://hopeforhie.org/parents/
- Courageous Parents Network: https://courageousparentsnetwork.org/
- Child Neurology Foundation: https://www.childneurologyfoundation.org/tools-resources/
- Cerebral Palsy Research Network - CPRN: https://cprn.org/
- Epilepsy Foundation: https://www.epilepsy.com/
- Perkins School for the Blind (CVI): https://www.perkins.org/
- Little Bear Sees (CVI initial diagnosis information): https://littlebearsees.org/
- Hands and Voices (Deaf and Hard-of-Hearing): https://www.handsandvoices.org/
- Rare Epilepsy Network (IS, LGS, ESES): https://www.rareepilepsynetwork.org/

20/05/2026

Children with Hypoxic Ischemic Encephalopathy (HIE) may experience developmental delays, learning difficulties and emotional struggles among other challenges. Early intervention programs, therapy, and mental health support can significantly improve their outcomes.