What to Ask the Neurologist After Your Baby’s HIE Diagnosis

Neurology appointments after an HIE diagnosis can feel overwhelming. The doctor uses words you may not fully understand, the appointment feels rushed, and by the time you get home, you realize you forgot to ask the things that matter most. This guide gives you specific, organized questions to bring with you so you can walk in prepared and leave with the information your family needs.

Questions About the Brain MRI

The brain MRI is the most important diagnostic tool after HIE. These questions help you understand what the scan showed and what it means for your baby:

• Which specific areas of the brain are affected? Understanding whether the injury involves the basal ganglia, watershed zones, white matter, or cortex helps you understand the likely developmental implications.
• What does the injury pattern suggest about when and how the oxygen deprivation occurred? Basal ganglia injury suggests acute, severe oxygen loss. Watershed injury suggests partial, prolonged deprivation. This matters both medically and if you are considering a case review.
• Does the PLIC (posterior limb of the internal capsule) appear normal? This specific brain structure carries motor signals from the brain to the body. Abnormal signal in the PLIC is one of the strongest individual predictors of motor impairment and cerebral palsy.
• Was MR spectroscopy (MRS) performed, and what did it show? MRS measures brain metabolites like lactate and NAA. Elevated lactate indicates ongoing cell injury; reduced NAA indicates neuronal damage.
• Do you recommend a follow-up MRI? Some neurologists recommend a repeat scan at 3 to 6 months to track how the injury evolves over time.
• Can I get a copy of the MRI images and the radiologist’s report? Having these on file is important for developmental planning, second opinions, and any future case review.

Questions About Seizures

Seizures occur in up to 50% of babies with moderate to severe HIE and are a critical part of the clinical picture:

• Were seizures detected on EEG during the NICU stay? Some seizures are subclinical (not visible) and can only be detected on continuous EEG monitoring.
• How many seizure episodes were recorded, and how severe were they?
• What anti-seizure medication was used, and is my baby still taking it? Common medications include phenobarbital and levetiracetam. Ask about the plan for tapering off if applicable.
• What is the risk that my baby will have seizures in the future?
• What should I watch for at home? Ask the neurologist to describe what seizure activity looks like in an infant so you know when to seek emergency help.

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Questions About Prognosis and Development

This is often the hardest part of the conversation, but these questions help you plan realistically:

• Based on the MRI and clinical exam, what is your assessment of my baby’s developmental outlook? Ask the neurologist to be specific rather than vague. “Guarded” or “we’ll have to wait and see” is not actionable information.
• Is my baby at risk for cerebral palsy? If yes, what type (spastic, dyskinetic, mixed) does the injury pattern suggest?
• What developmental milestones should I be watching for, and at what ages? Ask for specifics: head control by what age, sitting, reaching, first words.
• What are the signs that my baby may need additional evaluation or intervention?
• Is my baby at risk for cognitive, learning, or behavioral difficulties later? Some patterns of injury (especially watershed) are more associated with cognitive than motor challenges.

Questions About Therapies and Early Intervention

Early intervention is one of the most impactful things you can do for your child. These questions make sure it starts at the right time:

• Should my baby be referred for physical therapy (PT) now? PT supports gross motor development including head control, rolling, sitting, and walking.
• Should my baby be referred for occupational therapy (OT)? OT addresses fine motor skills, feeding, hand function, and sensory processing.
• Should my baby be referred for speech therapy? Speech therapy is not just about talking. In infants, it also addresses feeding coordination and swallowing safety.
• Is my baby eligible for state early intervention services? Every U.S. state has a federally funded early intervention program (Part C of IDEA) for children birth to age 3 with developmental concerns. Ask the neurologist for a referral or contact information.
• Are there any therapies I should start at home? Some neurologists provide guidance on positioning, tummy time, and stimulation activities that support development between formal therapy sessions.

Questions About Follow-Up and Documentation

Planning ahead ensures nothing falls through the cracks:

• When should the next neurology visit be? Ask for a specific timeframe, not just “in a few months.”
• What other specialists should my baby see? Depending on the injury, referrals to ophthalmology, audiology, or gastroenterology may be appropriate.
• Is there a formal HIE follow-up program at this hospital? Many children’s hospitals run structured neonatal follow-up clinics that coordinate all assessments in one visit.
• Can I get complete copies of all test results, imaging reports, and visit notes? Maintaining your own file of your baby’s medical records gives you a complete picture and is essential if you pursue a case review.