A Father's Guide to Fighting for a Child with HIE

When the Fight Starts Before the First Cry

Most birth stories begin with relief. This one began with a battle. A delayed diagnosis of hypoxic-ischemic encephalopathy (HIE) — brain injury caused by a lack of oxygen and blood flow around the time of birth — meant nearly eleven hours passed before the newborn at the center of this story received the emergency treatment her brain needed. She was transferred away from her parents to a NICU on Manhattan’s Fifth Avenue, where she spent twenty-one days fighting to breathe, to feed, and simply to survive, before she ever came home.

If you are reading this because your own child has been given an HIE diagnosis, you already know that particular kind of helplessness — watching machines and monitors do the work your arms want to do instead.

The Vigilance No One Warns You About

For the first six months after coming home, sleep became the enemy in this story. Once a parent has learned that a child’s condition can change between one heartbeat and the next, closing your eyes at night stops feeling like rest and starts feeling like risk. Night after night became a private, unannounced shift: watching the rise and fall of a small chest, memorizing the warning signs doctors had described, and treating every twitch or unfamiliar breath as a possible emergency.

This is one of the truest things the book gets right about HIE parenting: the exhaustion is invisible. From the outside, people see a devoted parent feeding and smiling at their baby. What they don’t see is the parent who hasn’t slept in days, quietly guarding against a threat no one else can see.

If you’re in that stage right now: it is not paranoia, and it is not a failure of trust in your medical team. It’s love reorganizing itself around fear. But it also isn’t sustainable alone — this is where naming the fear out loud, to a partner, a therapist, or another HIE parent, starts to matter as much as the vigilance itself.

What Hospital Monitoring Can Tell Us

At home, the father in the memoir watched for movements he feared might be seizures. His account describes the uncertainty of caregiving after discharge. It cannot establish what caused any particular movement or whether a seizure occurred.

Hospital research helps explain why observation can be difficult. In one video-EEG study of at-risk term newborns, many seizures detected by EEG had no visible sign on the simultaneous video. The study examined newborns monitored in hospital during the first days after birth.

The 2025 American Clinical Neurophysiology Society guideline suggests continuous EEG to improve diagnostic accuracy when seizures are suspected in hospitalized newborns. The guideline addresses inpatient monitoring and does not specify indications for outpatient neonatal EEG. Decisions about evaluation after discharge depend on the individual child and their care team.

The experience raises a separate research question: how might families record concerning events after discharge in a way that helps clinicians assess them? That question requires study before any approach can be recommended for routine home use.

Read the related research question

Redefining What a Victory Looks Like

In this story, an ordinary bottle feeding could take an entire hour. After weeks of learning to coordinate sucking, swallowing, and breathing in the NICU, feeding at home was still slow and easily derailed — sometimes only possible while the baby slept, held perfectly still so as not to break the rhythm.

To an outsider, an hour-long feeding might look inconvenient. To a parent living inside an HIE diagnosis, it’s something closer to sacred: every ounce is a milestone that used to be uncertain. That reframing — measuring progress in ounces and breaths instead of “normal” developmental timelines — is one of the most practical mindset shifts families in this situation describe.

What Actually Helped

Pulled from the throughline of this family’s journey, a few things repeat as genuinely useful for HIE families navigating early years and therapy:

Learn the language, but don’t let it own you. Understanding the medical terms for warning signs is protective. Letting it turn every twitch into a crisis is exhausting — try to build in check-ins with your care team so knowledge doesn’t collapse into constant fear.

Build small, private rituals. In this story, a counted “one, two, three” and a made-up bedtime song became more calming than almost anything clinical. Predictable, repeated connection — song, touch, routine — gives a child (and a parent) something steady to hold onto between appointments.

Let your definition of a “big day” shrink. A finished bottle, a held gaze, a night without an alarm — these count. Comparing your child’s timeline to a milestone chart written for typically developing infants will only add grief on top of an already heavy load.

Don’t carry the vigilance solo. The chapters where the father is watching alone at 3 a.m. are the ones that ache the most — not because the love was wrong, but because no one else knew what it was costing him. Tag in a partner, a family member, or a night nurse if you can, even for a few hours.

Find people who’ve lived it. Organizations built specifically for HIE families exist so parents don’t have to translate their fear from scratch to people who’ve never seen a NICU monitor. A support community that already speaks the language can carry weight that even the most loving outside friend can’t.

Courage, Redefined

One idea threads through the whole book: courage isn’t the absence of fear, it’s the quiet decision to choose one more breath, one more sunrise, one more tomorrow — for the child fighting to survive, and for the parent fighting to keep showing up. By the end, the story doesn’t promise that love fixes everything. It suggests something more honest: that a parent isn’t given the power to stop every storm, only the privilege of standing in it for as long as they’re allowed to.

For any parent reading this in the middle of their own HIE story — mid-NICU stay, mid-sleepless night, mid-hour-long bottle — that may be the most useful thing this book has to offer: permission to measure your love in breaths and ounces instead of milestones, and the reminder that showing up exhausted, afraid, and still there is not a small thing. It’s the whole fight.

References

1. Murray DM, Boylan GB, Ali I, Ryan CA, Murphy BP, Connolly S. Defining the gap between electrographic seizure burden, clinical expression and staff recognition of neonatal seizures. Arch Dis Child Fetal Neonatal Ed. 2008;93(3):F187–F191. DOI 10.1136/adc.2005.086314
2. Wusthoff CJ, Numis AL, Pressler RM, et al. The American Clinical Neurophysiology Society Guideline on Indications for Continuous Electroencephalography Monitoring in Neonates. J Clin Neurophysiol. 2025;42(1):1–11. DOI 10.1097/WNP.0000000000001120

Clinical references are provided for context and general education. They do not describe any specific patient’s medical record and should not be used to draw conclusions about any individual child’s care.