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.

The Gap No Amount of Watching Can Close

This is where the book’s most devastating chapter earns its ache. For six months, the father in this story sat awake beside his sleeping daughter, memorizing the medical language of warning signs — abnormal eye movements, sudden stiffening, rhythmic jerking, changes in breathing — and treating every twitch as a possible return of what he calls “the invisible storm.” He believed that if he watched closely enough, he could catch it in time. Newborn medicine tells a harder truth: he often couldn’t have, no matter how closely he watched.

A baby’s brain, especially one recovering from oxygen deprivation, can seize without producing any outward sign a parent or even a trained nurse could catch. Research on infants with moderate-to-severe HIE undergoing therapeutic hypothermia has found that roughly six in ten of them have seizures that are subclinical — visible only on EEG, with no clinical sign at all. In one widely cited video-EEG study of encephalopathic newborns, only about a third of confirmed electrographic seizures produced any recognizable clinical sign, and bedside nursing staff caught only about one in ten. Other studies have found that more than 90% of EEG-confirmed neonatal seizures have no visible clinical correlate whatsoever — and that even heart rate, something monitors track constantly, is not a reliable way to catch a seizure after birth asphyxia. In other words, the exact “twitch of her fingers” or “tightening of her tiny face” the father watched for all night is, by the numbers, one of the least reliable signals there is.

It gets harder still once treatment starts. Antiseizure medication can stop the outward twitching or stiffening while the seizure keeps firing silently in the brain — a phenomenon researchers call electroclinical dissociation, or “uncoupling.” A baby can look calm and settled to everyone in the room, including the most devoted father in the world, while still seizing underneath.

The only tool that reliably closes this gap is continuous EEG monitoring, with video, reviewed by someone trained to read it — the accepted gold standard for diagnosing and managing neonatal seizures. But that gold standard isn’t universally available: many neonatal units don’t have continuous EEG capability at all, and even units that do often lack round-the-clock expert interpretation of what the monitor is recording. So the honest answer to “could a machine have caught it” is sometimes no — not because nothing was watching, but because the specific kind of watching a newborn brain needs isn’t accessible everywhere, and isn’t something that can always be reconstructed after the fact. Read against that reality, the father’s six sleepless months weren’t a failure of vigilance. They were one parent trying, with the only tool he had — his own eyes — to do a job that, medically speaking, needed a machine his daughter’s care team may or may not have had running.

If your child is at risk for neonatal seizures: it’s worth explicitly asking your care team whether continuous EEG monitoring is available, whether it’s currently running, and who is reviewing it in real time. That question — not another hour of watching the crib — is the one thing that can actually close the gap that parental vigilance alone cannot.

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. Kharoshankaya L, Stevenson NJ, Livingstone V, et al. Seizure burden and neurodevelopmental outcome in neonates with hypoxic-ischaemic encephalopathy. Developmental Medicine & Child Neurology. 2016;58(12):1242–1248. doi:10.1111/dmcn.13215.
2. 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. Archives of Disease in Childhood: Fetal and Neonatal Edition, 2008;93(3):F187–F191.
3. Lawrence R, Mathur A, Nguyen The Tich S, Zempel J, Inder T, as cited in: Abend NS, Wusthoff CJ. Neonatal seizures. Neurologist, 2012; and in reviews of neonatal EEG monitoring practice.
4. Cherian PJ, Blok JH, Swarte RM, et al. Heart rate changes are insensitive for detecting postasphyxial seizures in neonates. Neurology, 2006;67(12):2221–2223.
5. Scher MS, Alvin J, Gaus L, Minnigh B, Painter MJ. Uncoupling of EEG-clinical neonatal seizures after antiepileptic drug use. Pediatric Neurology, 2003;28(4):277–280.
6. American Clinical Neurophysiology Society. Guideline on Continuous Electroencephalography Monitoring in Neonates. Journal of Clinical Neurophysiology, 2011.
7. Ryan MAJ, Malhotra A. Electrographic monitoring for seizure detection in the neonatal unit: current status and future direction. Pediatric Research. 2024;96(4):896–904. doi:10.1038/s41390-024-03207-2.

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.