Sometimes, parents and caregivers need help that isn’t necessarily from a medical professional. Sometimes, you just want someone who really understands your unique situation. You want another HIE parent (or even a group of them!) to commiserate with, get advice from, and talk to.
In many cases, HIE-specific support groups can fill this void, as they are composed of parents going through the same situation. Fellow parents to children with HIE can provide a perspective that doctors, therapists, or parents of children without disabilities simply cannot – because they are not living it.
As online support groups become more widespread, parents can more easily find individuals to talk to, and some provide in-person options as well. We’ve compiled a list of support groups and we hope that you can find helpful connections through them!
Parent Support Groups for HIE
The following support groups exist for parents of children with HIE:
- Newborn Brain Cooling is a closed Facebook support group for parents whose children have received hypothermia therapy (brain cooling) as infants.
- BabyCenter has several message boards relating to HIE, including:
- Beautiful Faces of HIE is a closed Facebook group solely for parents of children with HIE.
- Coping with HIE/CP is an open Facebook group for parents of children with HIE and/or cerebral palsy.
- Journey Into HIE is a closed Facebook group created and run by HIE mom Katie Spinks. Katie is an HIE advocate who has garnered a large following on TikTok and Instagram, educating the public about HIE through her daughter Jolene’s journey. We previously teamed up with Katie to raise $2,170 for HIE research at Michigan Medicine in 2025.
- HIE: Support for Your Journey is a closed Facebook group that only allows parents of children with HIE.
- The HIE Network is a UK-based, closed Facebook group for parents, foster-carers and other family members of a child with HIE.
Other Support Groups and Resources for Parents of Disabled Children
Other support groups and resources for more general concerns include:
- Cerebral Palsy Research Network is a joint effort between hospitals and community members who care deeply about improving health outcomes for people with cerebral palsy (CP). They have their own list of support groups (including a state-by-state list) and respite resources for families who have a loved one with CP.
- Parents of Disabled Adults is a forum for parents of adult children with disabilities. Disabled kids grow up! As they do, this community can help you navigate the challenges that come with transitioning to adulthood.
- PreemieWorld provides a regular newsletter to point parents of premature babies towards resources, support groups, and certain products to help parents care for their child at home. It also hasa Preemie Directory that can point parents towards resources and help for their kids, as well as parent and professional newsletters that track new developments, groups, and resources in the field.
- Inspire Forums have a space dedicated specifically to parents of preemies. They provide a place for discussion, local community resources and links to available and upcoming clinical trials.
- March of Dimes seeks to help prevent preterm births and address the high levels of both maternal and infant mortality across the United States.
Often, many larger disability-related organizations such as the Arc or United Cerebral Palsy will also have resources available for parents to support each other locally.
Disclaimer:
The HIE Help Center has no affiliation with the above support groups, and aims to provide this list as an informational resource only. Participation in many of these support groups is closed and limited only to parents of children with a specific diagnosis, making these forums and/or websites safe spaces for parents to freely discuss their child’s diagnosis.
Want to be added to our support group listing? Contact us via email at admin@hiehelpcenter.org.
Do you need someone to talk to?
Your child was just diagnosed with HIE and your head is spinning with what may feel like a thousand different things. Questions, medical terms, care plans; it can be difficult to make sense of everything that has happened.
As you start to do your research on exactly what your child’s diagnosis means, you may
be bombarded with facts, information, and advice regarding HIE, and you may be lost as to where to turn next.
We want to hear your story. HIE Help Center is owned by ABC Law Centers (a birth injury law firm). The intake team at ABC Law Centers is here to listen to every detail of what you and your family may have gone through during labor and delivery. Although we are not doctors and cannot provide medical advice, our team can provide you with resources tailored to your situation. Our team has reviewed and handled thousands of cases and is trained to recognize if there may have been medical malpractice that led to your child’s diagnosis, and we can advise if taking legal action may be beneficial to you and your family.
Contact us to speak with a member of our intake team.