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

Questions to Ask Your Child’s Care Team in the NICU

An HIE diagnosis can bring unfamiliar words and a lot of questions. This list can help you start conversations with your child’s care team, whether HIE happened around birth or later in childhood.

You don’t need to ask everything at once. Choose what matters most to your family right now, and return to the list as your questions change. It’s always okay to ask for a plain-language explanation, something to be repeated, or an interpreter for your first language.

Understanding the Diagnosis

Understanding the diagnosis

  • What does HIE mean for my child right now?
  • What do you know about how and when the injury happened? What remains uncertain?
  • How is the injury affecting my child’s brain and body?
  • If you’ve described the HIE as mild, moderate, or severe, what does that describe—and what can’t it tell us about the future?
  • Are there other diagnoses or medical concerns we should understand?
Understanding Tests and Monitoring

Understanding tests and monitoring

  • What tests and monitoring does my child need, and what can each tell us?
  • Has my child had seizures? How are you checking for seizures that may not be visible?
  • What does the EEG show?
  • What does the MRI show? Are there limits to what it can tell us?
  • Can someone walk us through the findings in plain language?
  • Will any tests need to be repeated? When and why?
Treatment and Daily Care

Treatment and daily care

  • What are the main goals of my child’s care today?
  • What treatments are being used, and what are their benefits, risks, and uncertainties?
  • If cooling treatment is being considered for my newborn, why do they qualify—or why don’t they?
  • What is each medication for? What should we know about side effects and how long it may be needed?
  • How are you assessing my child’s comfort or pain?
  • How can we safely participate in holding, comforting, feeding, or caring for our child?
  • Are there clinical trials that may be appropriate? What would participation involve?
Neonatal Seizures

The Question Prompt List (QPL) is designed to help parents of neonates with seizures feel more prepared when communicating with their child’s care team. It is a collection of common questions that other parents have found helpful during the neonatal period.

This tool is meant to enhance parent engagement and foster effective communication between parents and healthcare providers. You can explore the list of questions below or download the QPL tool to use when preparing for your next discussion with the care team. 

Field NK, Glass HC, Franck LS, Shellhaas RA, Means J, Lemmon ME; Neonatal Seizure Registry. A Novel Question Prompt List for Parents of Neonates With Seizures. Pediatr Neurol. 2024 Sep 7;161:64-66. doi: 10.1016/j.pediatrneurol.2024.08.012. PMID: 39288660.

What Questions Are In The QPL? 

  • Understanding my baby's seizure diagnosis
  • My baby's antiseizure medications
  • What to expect for my baby’s future
  • What to do in case of seizures after my baby goes home
  • Finding information and support

Download A Printable Version

ENGLISH
SPANISH
CHINESE

For Parents

Talking about the Future

Talking about the future

  • What can you tell us now about my child’s possible outcomes? What is too early to know?
  • Which findings are informing your assessment?
  • What could change your understanding over time?
  • How will you monitor movement, learning, communication, vision, hearing, feeding, and seizures?
  • When you say “wait and see,” what will we be watching for, and what support can begin now?
  • When can we revisit this conversation?
Preparing for Home or the Next Stage of Care

Preparing for home or the next stage of care

  • What needs to happen before my child can leave the hospital?
  • Will the next step be home, rehabilitation, or another care setting?
  • What training do we need for medications, feeding, equipment, or emergency care?
  • Can we practice these skills with someone before discharge?
  • What signs require emergency help, and which should prompt a call to the care team?
  • If seizures are a concern, will we have a written seizure action plan?
  • Who should we contact during the day, after hours, and on weekends?
  • Can we have a written care plan, medication list, and copies of important reports?
Follow-Up and Development

Follow-up and development

  • Who will coordinate my child’s care after discharge?
  • Which appointments and referrals should be arranged before we leave?
  • What developmental follow-up or rehabilitation does my child need?
  • Should we request early intervention or the equivalent services where we live?
  • How will follow-up continue if my child appears to be doing well?
  • What changes should we bring to your attention between appointments?
  • For an older child, what support may be needed to return to school and everyday activities?
Support for the Whole Family

Support for our whole family

  • Can we speak with a social worker or child life specialist?
  • What support is available for stress, trauma, grief, or uncertainty?
  • How can we help siblings understand what is happening?
  • Can someone help us navigate insurance, transportation, work leave, or other practical needs?
  • How can we connect with Hope for HIE and families with similar experiences?
  • Can we arrange a family meeting to discuss our questions, priorities, and next steps?
When Difficult Decisions Arise

When difficult decisions arise

  • What options are available, and what are the benefits, burdens, and uncertainties of each?
  • How can our family’s values and goals guide the care plan?
  • Could palliative care help support our child’s comfort and our family’s needs?
  • How much time do we have to make this decision?
  • Can we request another specialist’s input or a second opinion?

A helpful way to close any conversation

You are an important part of your child’s care team. Your questions, observations, and priorities matter.

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