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


Supporting families facing loss from HIE

November 16th, 2023  | HIE Loss  | News


Losing a child is an indescribable pain, and when that loss is due to a condition like hypoxic ischemic encephalopathy (HIE), it can be especially devastating for parents. During such challenging times, extended family and friends often want to provide support but may struggle with knowing the best ways to offer assistance.

Understanding how to be helpful to parents who have lost an infant or child to HIE requires sensitivity, empathy, and a willingness to be present in a supportive capacity. Here are some top tips for extended family and friends aiming to assist grieving parents during this difficult period:

  1. Listen and Validate Feelings: Grieving parents need a safe, open space to express their emotions. Offer your presence and listen without judgment. Acknowledge their pain, fear, anger, and any other emotions they might be experiencing. They may also feel relief, guilt, guilt from feeling relief, from the constant trauma they may have been experiencing with recurrent hospitalizations, impact to the full family quality of life, and other complex emotions that can come with losing a child with medical complexities, especially.
  2. Respect Their Grief Process: Everyone grieves differently. Some may want to talk about their child, while others might prefer solitude. Respect their pace and preferences, and avoid pushing them to move on or “get over” their loss. Grief is a lifelong journey. You never “get over” the loss of your child. You learn how to live with the grief.
  3. Offer Practical Support: Simple gestures can make a significant difference. Run errands, prepare meals, or handle household chores like laundry, dishes, and basic cleaning. These tasks can feel overwhelming for grieving parents, and your help can provide much-needed relief.
  4. Be Mindful of Triggers: Certain dates, holidays, family or community events, places, or even objects might trigger their grief in unexpected ways. Be mindful of these triggers and be sensitive when discussing potentially difficult topics, understanding that they may or may not be ready to participate in family or community activities, or may not participate in the same way as they did before their child died.
  5. Use Thoughtful Communication: Avoid clichés or phrases that might minimize their pain. Instead of saying, “Everything happens for a reason,” offer sincere condolences or simply say, “I’m here for you.”
  6. Remember Their Child: Acknowledge their child’s existence and the impact they had on their lives. Mention their child’s name and share fond memories. Send notes of support around key dates like birthdays, death anniversary dates and holidays that are likely to be extra difficult. Avoid acting as though their child never existed.
  7. Respect Their Privacy: Some parents might want space to grieve privately, while others may seek support from friends and family. Respect their need for privacy and boundaries.
  8. Offer Ongoing Support: Grief doesn’t have a timeline. Check in with them regularly, even after some time has passed. The initial outpouring of support may fade, but ongoing support is invaluable.
  9. Educate Yourself: Learn about HIE and its effects. Learn about being “trauma informed”. This knowledge can help you better understand their situation and offer more informed and compassionate support. All families who have faced HIE have experienced trauma.
  10. Encourage Professional Help if Needed: Grieving parents might benefit from professional counseling or support groups. Encourage them to seek help and additional support if they’re open to it, without pressuring them.
  11. Remember Siblings and Other Family Members: The grief extends beyond the parents. Siblings and other family members are also affected. Offer support and understanding to them as well. Offer to spend some special time with siblings, or plan something for the family to do together.
  12. Be Patient and Flexible: Grieving is a nonlinear process. Be patient and flexible in your support. Offer your presence and assistance without expecting immediate responses or visible progress.

In the face of such profound loss, the support of friends and family can be a source of comfort for grieving parents. Your empathy, understanding, and willingness to be there for them in whatever capacity they need can make a world of difference as they navigate this unimaginably difficult journey of healing and coping with the loss of their child to HIE.



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