Did you know there are currently ZERO published long-term follow up guidelines for neonatal and pediatric-acquired Hypoxic Ischemic Encephalopathy?
Thanks to members of our Medical Advisory Board, and leadership of the Neonatal Special Interest Group through the Child Neurology Society, we have begun the process to start the development of long-term follow-up guidelines for HIE.
We had OVER 120 child neurologists attend the Neonatal SIG session at the recent Child Neurology Society conference starting robust discussions stemming from the survey disseminated into our global community in October.
We look forward to continuing the in-person work at the 2025 International Newborn Brain Conference in La Jolla, California, where we will hold a special multidisciplinary lunch workshop on Thursday, February 20 at 12 pm. Local families are encouraged to attend and participate. Details are below in the NEXT STEPS section.
Infantile Spasms Counseling
Some of the most eye-opening data captured and analyzed was about counseling families about their baby’s risk for Infantile Spasms — a clear QI opportunity — where over 80% of families responding to the survey (almost 300 families!) stated they had never been counseled about IS in the NICU. Many reported only hearing about it through Hope for HIE’s educational resources for newly diagnosed families.
Time with Families in the NICU
Some of the attendees (keep in mind these were all neurologists in the room) with a show of hands indicated that many child neurologists only get one conversation when HIE families are in the NICU — often reporting MRI results, and sharing potentially devastating news to families. Many shared that families are overwhelmed with information, and limited resources of child neurologists was a barrier, looking to neonatology colleagues, NICU nurses, and multidisciplinary care providers to help fill these gaps.
Variety of NICU Follow-Up
From none to only with neonatology or developmental pediatrics, to a full multidisciplinary team, both families and providers shared the lack of standards for what is appropriate follow-up, what the definition of “long-term” is, and where we can start to look at developing guidelines beginning from obstetric communication through childhood development and transition to adulthood.
We know this work will take some time, resources and energy to push forward — and we look forward to tackling this project with many collaborators!
What’s Next?
We are holding a lunch workshop at the 2025 International Newborn Brain Conference on February 20, 2025 at 12 pm. We encourage conference attendees and local Hope for HIE families to attend and participate. Space is limited to 150.
For Local HIE Families
Sign up below on the interest form to be connected on more details of your participation, including funds for travel expenses
For Providers
Register for the 2025 International Newborn Brain Conference, and select the Hope for HIE lunch workshop. Space is Limited to 150 attendees.
Connect with families, read inspiring stories, and get helpful resources delivered right to your inbox.
Connect with families, read inspiring stories, and get helpful resources delivered right to your inbox.
