Child Spotlight: Max (HIE)

Child Spotlight: Max

1. What is the name of your child’s diagnosis?

Hypoxic Ischemic Encephalopathy, a type of neonatal brain injury, which caused cerebral palsy and a mild vision impairment.

2. Tell us a bit about how this affects your child

Max has cerebral palsy, so he wears orthotics on his legs to help keep them positioned and supported so it makes it easier for him to get around and do what he wants to do. He also has a mild vision impairment, so he gets some different visual accommodations in school and uses assistive tech for writing and other things to keep fatigue down. Max stopped moving when I was 37 weeks pregnant, with a failing placenta that cut off oxygen to him. He was saved by kick counts, and a really great medical team who got him out quickly, and transferred to be cooled (the frontline treatment for HIE).

3. What have you learned from your child and being his/her parent?

Max opened my world to a whole community of people who love their children so much, would literally go to the ends of the Earth for any sort of improvement to their quality of life, and immeasurable love. I have learned just how much work still needs to be done to make the world more accessible and inclusive. It’s not the disability that’s an issue, it’s accessibility.

4. If you could give any advice or guidance to a fellow mom receiving a new or similar diagnosis, what would it be?

Connect with others, and others across different challenges and outcomes from your own child, connect with adults with disabilities, find where you can make a difference and build your own support system.