Welcome to Hope for HIE! Whether you have a newly diagnosed child, or are finding our comprehensive support network for the first time, we want to welcome you to a place where HOPE is found in the journey.
First and foremost, it is our objective to serve the immediate families of children diagnosed with hypoxic ischemic encephalopathy (HIE). All of our groups in our support network are closed, bringing together people who can provide support to each other on this often difficult journey.
Our primary purpose is to connect parents and legal guardians of children with an HIE diagnosis. The Hope for HIE Foundation is a US-based 501(c)3 non-profit organization with a worldwide presence. What began in 2010 as a forum focused on connecting parents, has grown significantly into a recognized non-profit foundation, reaching and serving thousands of families a year.
Hope for HIE's virtual support network is primarily based on Facebook, as a part of outreach, and all groups, in person or online, operate under the these community guidelines.
The Hope for HIE culture centers around the experience of connecting with others and revolves around certain core values:
Advocacy - We will actively advocate for our children and fellow families. We will relentlessly pursue a world where HIE families can fully realize their potential.
Empathy - All families and children who experience HIE deserve empathy for the path they are on, no matter the outcome.
Integrity - We will be who we say we are, work together honestly and direct ourselves toward building the organization for the greater good.
Unity - We will be open and honest with each other. We realize we are stronger together and group needs are stronger than individual agendas.
Reflection - We will carefully analyze all decisions that are made and adjust the scope or expectations in order to best benefit the HIE community at large.
Who is welcome in the Hope for HIE network?
Hope for HIE's support is geared first and foremost to parents of children who have been diagnosed with HIE, regardless of severity or outcome. We also welcome grandparents, aunts and uncles of HIE children, though these relatives must be added by the parents by messaging a Hope for HIE admin to confirm membership. Facebook profiles on behalf of a child will not be added in - parents profiles must request.
While we appreciate that many of us have other family members and friends who provide amazing support, the focus of this space is on the parents and kids. Therefore, if you are not a parent, grandparent, aunt or uncle of an HIE child, you are not eligible to be in the group.
New requests will be sent vetting questions and asked to confirm their connection to HIE prior to being admitted to the group. Once in the group, we ask that you post an introduction. We work hard to ensure this is a safe place for all. As a part of our comprehensive network, we have several dedicated sub-groups. Please take a look in the FILES section of the main Hope for HIE Facebook group for a list that may help in your individual circumstance.
Current Moderators & Admins:
Karissa Shepherd, Betsy Pilon, Lindsay Vanzandt, Clarissa Stuckenburg, Jennifer Kegyes (Jennifer is also the foundation Family Outreach chair, and can be reached by email at email@example.com)
What can you expect to find in our network?
Support and understanding from others who’ve been in the same place - and a little bit of hope in every situation, from those unaffected to those who have lost their children to HIE, and everything in between. Our commonality, aside from a HIE diagnosis, is the journey we are taking together. By not emphasizing outcomes, our organization can cohesively support and include everyone on their HIE journey, giving much-needed support for each circumstance.
Families are here to: Seek support, or Give support
Our community is intended for people to be actively engaged in support. We define support as giving personal experience to a situation, giving positive moral support and connecting participants to each other who have shared similar experiences to learn from one another.
We respect that each family has their own dynamic, outcome and journey to travel, and have found when others lack tact, sensitivity and empathy, it detracts from the positive experience we all work to build.
Main Group Structure
We heavily utilize our pinned posts to help keep the flow of information steady in the main discussion threads. This allows the main feed to be focused on families asking questions and needing direct support.
All of the following came about based on community feedback and as a participant, it is your responsibility to be aware and utilize the following:
- Weekly Mentions - Each Monday, a thread is started for CELEBRATION posts. This is the spot to post pictures and talk about inchstones, milestones, new equipment that's working, therapies, happy moments you want to share with the group. Photos and videos may be posted freely! This is also a place you can post personal fundraising efforts for your child (not for overall living expenses since we are all in the same boat) and any contests your child has been entered in (once per week).
- Member Marketplace - We have created a subgroup for families to post equipment/supplies they may be selling, items that our members may have made that would benefit our families, etc. Click here to join.
- Friday Photo Bomb - Each Friday a thread is started for fun to show the faces of our beautiful children. This is not the same place to post celebrations, but rather just simply a place to ensure everyone can appreciate how wonderful each of our children are.
- Friendly Admin Reminders - Occasionally, the admin team will post a topic for the membership to take note of. These are just a way to keep communication lines open to keeping the place a safe, positive place to be.
- Searching Past Posts - The forums present a trove of information from previous discussions. It is highly encouraged to utilize the SEARCH function for a specific topic before you post asking on a new topic.
Bumping - If you do not get an answer to a question in 24 hours, you may “bump” up a post, once per 24 hours. Sometimes people may not have the experience to share on a specific topic, and we know it can be difficult to wait for an answer, but consistently bumping posts detracts from the flow of information.
Following -Commenting that you are “following” a post, without giving additional insight or support, detracts from supporting the original poster. Facebook has a feature to "turn on notifications for this post" that can be accessed by tapping the downward arrow and selecting that option on any post. Any comments of "following", "f", "*", etc. will be removed.
- Pictures with Posts - Pictures are always welcomed along with on topic posts. Calling out a "picture for attention" isn't necessary as no post is more important than another to call attention to.
- Birthday Celebrations - Birthdays are a big deal, filled with big emotions for our parents. Feel free to share in the main feed about your child's birthday!
- Reflections - Reflections about the journey with HIE are always welcomed in the main feed, as long as they are within the scope of the community guidelines.
- Videos Asking for Diagnoses, Interpretation, etc. - We are a peer-to-peer support forum, and are not medical professionals. If you believe your child is seizing, or has Infantile Spasms, which are a medical emergency, please seek medical treatment ASAP and send your video to your medical team.
We have a number of sub-groups providing specialized support for a variety of topics that work better in a sub-group format. Each group operates under the same community guidelines as the rest of Hope for HIE's network. However, discussion is focused on the sub-group topic. Each group has a dedicated team of admins who are experienced in the topic at hand. Additional "house rules" may be in place, depending on the sub-group.
Soliciting for fundraisers, personal businesses or other off-topic promotions is not allowed and those posts will be removed.
If there is a sub-group that does not exist for your area or need, please contact firstname.lastname@example.org, or one of the Main Forum Admins to discuss creating it.
INTERACTING IN OUR COMMUNITY
Know Your Audience - Some Points to Consider When Engaging in our Network
The Think Before You Speak guide: Before you post or comment, ask yourself:
Is it TRUE?
Is it HELPFUL?
Is it INSPIRING?
Is it NECESSARY?
Is it KIND?
You want to tick as many of those boxes as you can before you start typing or hit post. If you find yourself reading a post or a comment that sparks negative feelings, please consider very carefully what to say, and whether you need to say it at all. This group is for support.
This guide on How to Think Before Speaking is very helpful.
Tact and Sensitivity
Tact and sensitivity is required from our membership, across all outcomes. While there is not a clear cut definition, keeping in mind you are posting to a forum that contains all HIE causes and outcomes should be well thought of prior to posting or commenting. Certain phrases that are used for “flair” instead of fact should be avoided, remembering the full breadth of outcomes we have represented.
We are a worldwide group with many cultural and religious backgrounds, including a lack of religion. Please keep this in mind when commenting.
Stay on topic
The common thing that brings us together here is our HIE experience, and that’s what we’re here to discuss. Where possible, please stay on topic about HIE, and the specific topic at hand. This includes all the ways that HIE affects your lives, so it’s far from restrictive.
Bringing in questions/posts from others who are not a part of our network and do not have a connection with HIE is prohibited, as it takes focus away from our engaged HIE families. The same goes for bringing in screenshots, drama from other groups, or posts outside of Hope for HIE.
Posting with Dignity and Respect
We recognize that there are many instances of sharing the real and raw parts of our journey together. We also recognize that each of us as parents have a duty to protect our children, and promote representing those with disabilities with dignity and respect. Photos and videos posted by caregivers, parents, etc. throughout social media that show private body parts, do not promote a dignified essence of the person represented (people laying in their own feces, excrement, bodily fluids, screaming relentlessly in excruciating pain, seizing, etc.) are under legal scrutiny. Photos and videos of this nature will be removed immediately.
Word choice and context are VERY important.
Because of the dynamics of a "virtual" network, there are certain triggers and topics that have a history of creating strife in our support network. We have been working over the past several years to create and maintain our positive culture, and ask that before posting, or commenting, you consider how you say something.
Here is some additional clarity regarding the following topics:
Religion and Politics – Both topics are about as individual as each child's HIE outcome. We are a worldwide group, many who practice religion and many who do not, many who have specific political views, and many who do not. Please avoid projecting your religion or lack thereof on others, and your political beliefs, or lack thereof on others. Asking for prayers or telling someone you will pray for them is totally appropriate, and generally well received. Telling someone they aren't praying hard enough for their child is not. Saying that because you prayed or practice a particular faith, you had a better outcome, or was the reason your child had a different outcome than others is also not appropriate. Extending unhelpful platitudes such as "God only gives you what you can handle" are also not welcomed.
Worldwide/Cultural Differences - We are a worldwide community and have people who are in a spectrum of life circumstances. Bashing other countries medical, insurance programs and services, cultural practices and differences, projecting self-righteousness over another due to socioeconomic, cultural, or other worldly condition won't be tolerated.
Treatment/Medical Choices – Each member is doing their personal best to advocate and treat their child the best they can, finding what works for their individual situation. What works for one, may not work for another, so please be sensitive in giving advice. It's the difference between "this didn't work for us" and "you're stupid for trying this with your kid". Likewise, implying your choices are the sole reason for your child's outcome and projecting that upon others who make different choices comes off as self-righteous and is not supportive to others.
Legal Discussions - Any space in social media should not be considered "closed" or "private", especially in regards to potential litigation. Engaging in discussions regarding potential litigation in social media can potentially jeopardize a legal case. Due to our commitment to protect our families and the foundation, we will no longer be allowing discussions to take place about litigation details, lawyer recommendations, etc. Posts that are regarding litigation details, seeking to get legal advice or recommendations, and comments attempting to give legal advice or recommendations, will be removed.
Inaccurate Language & Information - Sharing accurate information regarding HIE and its potential and known effects is of utmost importance in our community. Because HIE can and does affect in a multitude of different ways, we ask our community to avoid sharing inaccurate information and blanket statements. We have a full range of outcomes and communicating with tact and sensitivity comes with using accurate terminology and word choice that is appropriate. A child that lives was not “stillborn” or “born dead”. Please avoid using these phrases unless your child was actually a stillbirth or a loss. Likewise, we work to reduce the negative stigma behind disabilities. Think before posting how it appears to someone with a different outcome than yours. Verbiage that is deemed inaccurate or lacking tact and sensitivity will be flagged and removed.
Vaccinations - We limit conversations on our forums about vaccines to the specific issues our HIE kids face (compromised immune system issues due to various treatments, delay strategies, etc.). Discussions pertaining to the overall benefits or dangers associated with vaccinations will not be allowed. As of 11/7/2017, due to members continually not following the guidelines regarding discussions on vaccines, all posts, comments, etc. regarding vaccinations will be removed. Continued insistence on this issue will see members muted for 24 hours and/or removed permanently from our network.
Practicing Empathy – Each HIE child is a gift. Whether they lived for five minutes, or came out unaffected. By utilizing verbiage that insinuates one outcome is superior to another, by commenting or insinuating parents aren't trying hard enough to help their child, by assuming the group can benefit from a "drive by" bragging of an outcome and not engaging in day-to-day support, or by being dismissive of others feelings by projecting your own grief and partaking in "Suffering Olympics" (“be thankful your child does xyz”, etc), it brings out very raw emotions from the focus of finding joy along the journey, and in turn divides the group.
In addition, if you have no personal experience on a topic, please refrain from judgmental comments that are against the spirit of support.
We HIGHLY ENCOURAGE families to take the leap to learn from each other across all outcomes, to appreciate the joy and love that each child brings, and to avoid pity, bragging and shortsighted commentary that divides the group. Divisive posts/comments will either have comments turned off or be removed, at the discretion of the admins.
We promote a culture where HOPE IS IN THE JOURNEY, NOT THE OUTCOME.
Sharing Group Posts & Information
Please be aware that our network groups are closed. Everything said and posted here is intended to remain here and go no further. People here share their deepest feelings, fears and thoughts, often sharing information they would not elsewhere. Unless with the expressed permission of individual members, no material posted here is to be shared elsewhere for any reason, including lifting photos, screenshots of conversations, copying and pasting, etc. Doing so will result in immediate removal from the group. Discussing other people's children is something that should begin with the parent of that child.
Some families who are involved in lawsuits should also be aware that what they post to this group could be subpoenaed. Please utilize your legal contact or refer to Facebook's Terms of Service for more guidance.
Personal attacks will not be tolerated, and will be deleted at the discretion of the administrators. This is not to say you can’t disagree, or express your opinion - it is to say that stating things in a respectful manner, even with disagreements, is required, as is keeping on topic and sharing personal experiences. Providing additional information on a subject or more clarification to a topic when presented in a respectful manner is not a personal attack.
Fear Mongering & Spreading False Information
Posts that are flagged by members or admins for fear-mongering, spreading false information, etc. may be removed at the discretion of the admins. Continued efforts to spread misinformation or fear monger may result in muting or removal of the member.
In the age of "fake news" and pseudoscience, we ask our members to look at the sources they share with our network prior to posting. Prior to bringing in an outside article or "research", does it pass the following test:
There is no need to repeat the same point multiple times, nor any need to post about the same topic over and over again, expecting different responses. Badgering or belaboring posts and/or will be deleted, or an entire thread will have comments turned off.
Block members who brings up negative feelings for you
You can block anyone on Facebook, and if you do so, you’ll see no further posts or comments from them, and they will no longer be able to see anything you post. If you find that a group member routinely posts opinions or information that bring out negative feelings in yourself, it is your responsibility to block them to avoid conflict rather than reacting to everything they say. If this becomes a chronic issue, you will be asked to either stop commenting, or remove yourself from the group.
Blocking admins is not allowed. Should you block an admin, you will be removed from our network.
Soliciting Group Members
By being a member of the Hope for HIE forums, you agree to not spam or solicit our membership individually through personal messages, in person Hope for HIE events, promoting business ventures, etc. and contain promoting personal businesses or fundraisers to the weekly MEMBER MARKETPLACE subgroup.
Harvesting members from our group for other groups is also not allowed and posts will be removed, and you may either be placed on a break or removed, depending on the severity.
For our full non-solicitation policy, please click here.
Violating Our Guidelines
We are deeply committed to providing an inclusive, positive experience for families in our support network. Instances of personal attacks or violating these guidelines will see you muted for a period of time, or removed from our networks permanently, as determined by the admin team.
Message an Admin/Moderator if You have a Concern
Please report any content you feel violates our community guidelines through Facebook's reporting tool. Rather than spreading drama through the group OR bottling up your feelings until you can’t keep quiet anymore, please consider contacting a group admin to talk about how you feel in private - or alternately, contact any person whose comments have bothered you directly for a civil conversation.
Remember that there are other options
Please reference the document in the FILES section for additional groups for HIE support. Everyone's journey is an individual one, and we wish you the best finding the spot you feel most comfortable expressing your journey. If you are not comfortable with these rules and guidelines, we wish you well and hope you find a place that you are comfortable with.
Families who choose to leave the group for their own reasons are always welcome back if they feel ready to return. However, if you have been removed for the group by the admin team, cultivated unnecessary drama upon your exit (known as flouncing), or other extreme circumstance, you will not be welcomed back.
Legal Disclaimer: Hope for HIE's organization and its admins highly suggest families treat this group as an extension of an open internet, in regards to legal matters. While we are careful to screen incoming members for their connection to HIE, adding in only parents and immediate family of their choosing, Facebook has its own terms and conditions for data storing and any material asked for during a discovery process for any legal matters is out of our hands. Deleting previous posts will not delete them permanently from Facebook's cache. We remind members to be mindful of the information posted, as always.
Medical Disclaimer: Hope for HIE's forum contains posts on many medical topics; however, there is absolutely no assurance that any statement contained or cited in an comment touching on medical matters is true, correct, precise, or up-to-date. Even if a statement made about medicine is accurate, it may not apply to you or your child. The medical information on the forum cannot substitute for the advice of a medical professional (for instance, a qualified doctor/physician, nurse, pharmacist, etc.). None of the individual contributors or administrators of the forum can take any responsibility for the results or consequences of any attempt to use or adopt any of the information presented on this group.