Resources

Support yourself and your family
Know that you are not alone.

2. Seek support

  • For Siblings - a resource for siblings of children with special needs, disabilities, and chronic illnesses: Link 
  • For Parents - know that you are not alone. Connect with other parents who have similar experiences:

 

A purple flower with a yellow center, surrounded by the text "Casey's Circle" in a circular frame.

Casey’s Circle is a nonprofit dedicated to helping families of children with special needs find ways for their kids to be kids first – patients later. 

The words "HOPE for HIE" in white text on a blue background.

Hope for HIE is a global community and non-profit dedicated to improving the quality of life for children and families affected by Hypoxic Ischemic Encephalopathy (HIE).

 

The image shows the "Hand to Hold" logo with the tagline "NICU Babies - Parent Support" in green, alongside a stylized "H."

Hand to Hold provides personalized support before, during and after a NICU stay to help ensure all NICU families thrive.

A logo for the Child Neurology Foundation, featuring four colorful handprints on the left and the text "Child Neurology Foundation, Creating a Community of Support" on the right.

Child Neurology Foundation is committed to helping children and their families living with a neurologic condition receive the best care and achieve their highest quality of life.

3. Ask your healthcare provider or social workers to connect you with resources for social and emotional support

4. Celebrate every moment and small victory with your child and family

5. Explore our NSR Infographics 

 

English

Other Languages

 

Long-term Experience After Neonatal Seizures

This infographic was created by the NSR, using information adapted from the NSR.

An infographic titled "Long-term Experiences After Neonatal Seizures – Lessons From Parents." It highlights themes of joy, daily challenges, and long-term care needs involved in caring for children with neonatal seizures. The infographic also features parent quotes, supportive tips, and links to resources designed to empower families throughout their journey.

 

 

 

Spanish

Arabic

 

Question Prompt List

This infographic was created by the NSR, using information adapted from the NSR.

Infographic titled "Question Prompt List for Parents After Neonatal Seizures." Questions are organized into five categories: Understanding my baby’s seizure diagnosis, My baby’s antiseizure medications, What to expect for my baby’s future, What to do in case of seizures after my baby goes home, and Finding more information and support. A QR code at the bottom links to the full list of questions available on the website.

 

 

 

Spanish

Arabic

 

Parent Well-Being 

This infographic was created by NSR and Hope for HIE, using information adapted from the NSR.

Infographic titled “Parents of Infants with Neonatal Seizures: Know That You Are Not Alone.” It presents research from the Neonatal Seizure Registry that many parents with children with neonatal seizures. The infographic highlights the importance of parent well-being, outlines common challenges and sources of strength in families, and provides supportive tips. A QR code at the bottom links to additional resources.

 

 

 

Spanish

 

Infantile Spasms 

This infographic was created by NSR and Hope for HIE, using information adapted from the NSR, Infantile Spasms Action Network and the Child Neurology Foundation.

Infographic titled “Infantile Spasms: Know the Risks.” It shares that infants with a history of neonatal seizures are at an increased risk for Infantile Spasms. Three risk factors are highlighted: severely abnormal EEG, specific brain injuries on MRI, and abnormal muscle tone in the newborn exam. The “STOP” acronym is used to guide response: See the signs, Take a video, Obtain a diagnosis, and Prioritize treatment. A QR code at the bottom links to additional resources.

 

 

 

Spanish

 

Parent Well-Being Trajectory 

This infographic was created by NSR and Hope for HIE, using information adapted from the NSR, Infantile Spasms Action Network and the Child Neurology Foundation.

Infographic titled “Long-Term Trajectories After Neonatal Seizures.” It illustrates varying developmental outcomes for children after neonatal seizures, including typical development, cerebral palsy, epilepsy, and developmental delays. The graphic emphasizes the importance of early interventions and follow-up care. A QR code at the bottom links to additional resources.

 

 

 

Spanish

To learn more about how you can support our work call (415) 476-3785 or email us [email protected]