Questions for HPE Parents' Handbook
Week 1 Questions
1. When did you first learn that your child had HPE, and who told you this news? How was it explained to you and what types of educational or support materials were made available to you?
2. How did you react to the diagnosis of HPE, and how did you cope in the first days and weeks following the diagnosis?
Week 2 Questions
1. What has been the most challenging symptom of your child's HPE? How have you dealt with the challenge?
2. Many fear that a child born with HPE will live a life of suffering. Do you feel that your child has experienced suffering as a direct result of HPE? Why or why not?
3. If you received a prenatal diagnosis of HPE, how did you react to the news? What options were presented to you and what were your thoughts based upon these options?
4. If you received a prenatal diagnosis, did you prepare a birth plan? How did you prepare for your baby's arrival?
Week 3 Questions
1. Upon receiving the diagnosis of HPE for your child, did you ask "Why me?" If so, how did you come to terms with that question?
2. How has the diagnosis of HPE affected your thoughts or plans about future pregnancies?
3. If you have experienced the death of your child with HPE, what are some of the ways that you or your family have coped in the days, months, and years following the death?
4. For bereaved families, in what ways have your found hope or strength through your grief?
To reply to these questions, please send an e-mail message to handbook@FamiliesforHoPE.org.
Due
to HIPPA and privacy concerns, everyone who submits a photo or writes
information for the handbook will be asked to sign necessary release forms in
order to be recognized in the handbook. If you would prefer to remain
anonymous or use a name other than your own, please contact us and we will work
with you on that. Due to limited space, not every answer will be printed, but we will try to get a range of opinions on all topics presented.
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