Hope for HIE – Hypoxic Ischemic Encephalopathy Hope for HIE – Hypoxic Ischemic Encephalopathy

For Parents

WE’RE ALL IN FOR YOU

Whatever is ahead, no matter the outcome, we are with you on your journey to support and empower you.

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NEWLY DIAGNOSED

No matter what lies ahead, take comfort in knowing that you are not alone.

We understand and have been where you are right now, and we want you to know that you are not alone.

Know that thousands of families are here for you in your journey, no matter what is ahead.

The HIE experience is unique, and we want to share with you resources that can help you, through our peer-to-peer support network, and in collaboration with your medical team. We have parents dedicated to connecting with you as a new parent in this journey, and we look forward to getting to know you and your family.

When you are ready, we are here, 24/7, to help you. 

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THE HIE NICU EXPERIENCE

THE JOURNEY BEGINS

If you have found us early in your journey, we want to provide some more information on what a NICU experience might look like for you and your child.

A baby is born – they may have experienced HIE before or during the birth process. Assessments of APGAR scores, cord blood gases, and a baby’s situation are done to confirm suspected HIE, and to see if a child qualifies for therapeutic hypothermia (cooling).

Whether it is within the birth hospital, or through ambulance or helicopter, the baby is transported to the NICU for further assessment and, if appropriate, to begin the therapeutic hypothermic cooling process. Many babies need multiple interventions such as breathing and blood pressure support, an IV in the belly button to administer medications, and will receive neurological diagnostic testing such as EEG, as neonatal seizures are very common in HIE. Medications may be used to control seizures, and keep babies stable and comfortable during cooling. Many hospitals have access to mental health resources in the NICU for families, so be sure the social worker.

If a baby meets the criteria to be cooled, they will be placed either on a cooling blanket, wrap, or head cooling cap for 72 hours at around 91⁰F. This is to slow the body down and focus the body’s healing on the brain. If you are unable to hold your baby during cooling, talk to your team about other ways to make memories, bond and care for your baby during this part of the journey.

After a child is rewarmed, or if they did not go through cooling, a MRI is typically done around day 5, although it may be done earlier or later, depending on the circumstances. MRIs can show the NICU team where the brain may have experienced injury or damage. MRIs do have limitations, and it is our recommendation that they are not taken as a “set in stone” use of prognosis. As they are a picture in time, and due to how babies brains develop, they may not show all impact. HIE has a wide range of outcomes.

While some hospitals have made it possible to hold your baby during cooling, if they are cooled, many babies are not stable enough. The first hold is a keystone moment for families, and may happen right after cooling, or the following few days or week, depending on the medical stability and touch tolerance of each baby.

Depending on the baby and their clinical course, they will be working hard to recover from the initial trauma of HIE. Families should be encouraged to attend daily rounds with the team. Some babies may be able to feed at the breast or using a bottle, and some may need a feeding tube placed through the nose to the stomach. If a baby’s suck/swallow/gag reflexes are absent or weak, a g-tube can be surgically placed in the abdomen, and allow the baby to safely transition home. Many babies will need supplemental oxygen for a period of time, and work on decreasing their need over time.

At last, it is time to discharge from the NICU. Each NICU has its own criteria, and discharge procedures. Babies typically have to be able to get safe and consistent nutrition whether by breast, bottle or tube, and meet other medical milestones. Most families are required to take infant CPR classes, and families should be connected to follow up primary and specialist care appointments, early intervention services, social/emotional support for the family to process this time, and learn about the signs of seizures or other difficulties HIE babies are at risk for.

Connecting with peer-to-peer support, ideally in the NICU, or after the baby goes home can improve mental health and the parenting experience. Connecting with other families who have gone through the unique HIE NICU experience can empower parents to further understand, process, and accept the situation they have been through. In-person NICU support groups through hospitals are also very helpful. And, through early intervention, many parent groups can be helpful to understand risk factors and other nuances to this journey.

The First Year

GET CONNECTED

Hope for HIE began with a virtual network of parents seeking to connect after their child had been diagnosed with HIE (Hypoxic Ischemic Encephalopathy). We have families all around the globe, and many local groups that host meet ups, awareness and fundraising events, and other opportunities to connect.

FACEBOOK SUPPORT GROUPS

We host over 100 topic-focused and location-based support groups found on Facebook. Upon requesting, you will be sent a few questions to be verified before adding you into our network. All questions need to be answered before you will be granted entry.

Find Your Group

If you are a legal parent or guardian of a child with HIE, we invite you to request our main parent forum.

Main Parent Forum

If you are new to the journey, within the first year post diagnosis, our New to HIE group has designated administrators and moderators who come with years of experience and are standing by to support the unique needs of our new families who find us.

New to HIE Forum

If you are a grandparent, aunt, uncle or other extended family member, we also have a group for you.

Extended Family Support

Need additional information or support? Contact us by sending an email and one of our board of directors will reach out.

If you don’t have Facebook, reach out to us to be connected to a local HIE family.

 

IN REMEMBRANCE

For those children who succumb to their injuries, we cherish their legacies and grieve with their families. Hope for HIE works to ensure that no one faces HIE alone, and is committed to providing support for families facing the loss of their beautiful children gone too soon.

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