HIE is tricky. There is a vast spectrum of outcomes, no two injuries present that same way, and for many, you won't know how HIE fully affects a child until they are much older because of how brains develop. For some, it will be obvious in the first few months, for others, it may take years until they reach school age, and for some others, they may question if something is because of HIE or just a nuance of who their child is.
The "norm" for follow up care after HIE around birth is follow up for 2-3 years to track development with a team comprised of potentially a neonatalogist, PT, OT, speech pathologist and pediatric neurologist. Many who appear to be following a typical developmental path will get signed off after the two or three year old mark.
There are many physicians and neuropsychologists who feel this is too early, as the research samples of long-term studies continue to be small, and information is lacking about neurodevelopmental outcomes into school age and beyond.
In Hope for HIE's online parenting forums, many families who once were signed off early by their teams end up coming back confused, angered and bewildered as their children, who they were assured were following a typical developmental schedule, find they are experiencing challenges.
One parent posted (shared anonymously, but with permission), "We were assured that our daughter was meeting and exceeding milestones, and she was. Once she reached school age, and into kindergarten and first grade, it became obvious her working memory and math skills were below average. This correlates to the type of damage we were told she had, to the frontal lobe, but we had not seen any issues. Once identified, we could work on those specific areas and get accommodations with her schooling."
HIE is tricky.
How do you balance reality and expectations with not promoting a culture of fear?
At Hope for HIE, we work tirelessly to address parental concerns, provide the factual information we know from research studies and our own families who actively participate in our network, and share their stories.
With so many causes of HIE, and so many various HIE outcomes, Hope for HIE is working to change the dialogue that professionals have with their patients to ensure they get the monitoring, accurate information, and reassurance they need.
One of the best ways to stomp out fear is to be educated on childhood development, and gain an understanding of the brain and how it develops. Hope for HIE has developed some resources, and shares other vetted sources to ensure the greater community can gain a deeper understanding of the long-term possibilities that families can face, while celebrating the amazing children and families we have, despite any challenges they face.
For more information, here are some of our favorite graphics and resources: