There is a moment many NICU families know. The monitors come off, the discharge papers are signed, and suddenly the machines that watched over a child are gone. The fear, though, stays. It comes home too.
In Chapter Nine of The Silence Between Two Heartbeats, "Six Months Without a Night," a father sits beside a sleeping infant night after night, often until dawn [1]. He is watching for what the book calls "the invisible storm": a twitch of the fingers, a tightening of the face, movement under the eyelids, a change in breathing. Every small motion becomes a question he has no way to answer.
That chapter is the starting point for a new medical humanities prospectus, From Lived Experience to Research Questions [2]. It asks something simple and difficult: what can one family's story contribute to research?
A story as a source of questions, not proof
The prospectus is careful about what it claims. A memoir is not a medical record. It cannot tell us what any event was clinically, and it passes no judgment on any doctor or hospital. The book itself notes that some passages were artistically reconstructed, and its second half is an allegorical fairy tale, so the prospectus draws only on Part I and reads even that as testimony [1, 2].
What a memoir can do is notice things a chart is never designed to capture: what happens at 3 a.m., what a caregiver fears, what he wished he could show a doctor. Those observations can point toward questions researchers can test, including questions whose answer may turn out to be "no."
The central question
Read closely, Chapter Nine does not describe a medical event. It describes an information gap. The father had movements that might or might not matter, no way to record them in a form a clinician could interpret, and no way to learn which ones were harmless. That gap becomes the prospectus's primary research question [2]:
After NICU discharge for high-risk infants, is there a safe, practical, non-invasive, clinically validated way to capture abnormal brain activity at home when caregivers observe concerning movements?
The later chapters sharpen it [1]. When a feared episode finally came, it happened during the few minutes the father had stepped out, so constant watching did not catch it. The first report anyone could give was a single word, "shaking," relayed by phone under enormous stress. Even in intensive care, a cold towel made the baby jerk and the fear returned instantly, though a startle to cold is not a seizure.
What the research shows so far
A rapid review of the literature suggests the honest answer today is not yet [2].
- Watching is not enough. The International League Against Epilepsy places EEG at the center of neonatal seizure diagnosis and notes that many seizures in newborns are electrographic only, with no visible sign [3]. Even trained professionals disagree when classifying infant movements without EEG [4], and in one analysis experienced neonatologists recognized seizures in only 22–57% of seizure-positive recordings [5]. A parent's devotion, however complete, cannot settle the question he is asking.
- Phone video helps, within limits. Expert review of outpatient smartphone videos predicted a video-EEG diagnosis of epileptic seizures 89.1% of the time in adults [6], and infants with epileptic spasms whose events were filmed were diagnosed and treated a median of 17 days earlier [7]. But video records movement, not brain activity.
- Home EEG works, but not yet for babies. A pilot of 20 home video-EEG studies found the approach feasible, but participants were aged about 2 to 17 years, and these were scheduled, technologist-applied recordings, not ones started when an event happened [8].
- Smart tools are still hospital-bound. In the ANSeR trial of 264 newborns across eight European centers, a real-time detection algorithm raised correct recognition of seizure hours from 45.3% to 66.0%, but it ran on full NICU EEG with clinicians present [9].
The fear in Chapter Nine is grounded in real risk, but not a universal one. In one cohort of cooled infants with moderate-to-severe encephalopathy, 15% developed epilepsy by 24 months [10]. Most at-risk infants will not, and families have no way to know which group their child is in.
The review found no validated way for a caregiver to start an EEG recording for an infant at home [2]. The missing piece is not a sensor or an algorithm. It is a pathway: who applies the device, when, how the signal is reviewed, how fast, and what the family is told.
Ten more questions from one book
Beyond the central question, the prospectus draws ten further research questions from the memoir, each framed cautiously [2]:
- How do parents understand the timing of treatment when a newborn must be transferred to another hospital?
- What lactation support do mothers receive when they are discharged from one hospital while their baby is in another?
- How do families recall early worst-case prognoses when their child later does better than predicted?
- What feeding patterns do caregivers see after discharge, and which ones need a specialist?
- How do parents manage bitter liquid medicines a baby refuses?
- How is fear of recurrence linked to caregivers' sleep loss and lasting stress? Anxiety and post-traumatic stress are common among neonatal-unit parents, with nearly two in five reporting symptoms in the first month [11].
- How do parents tell normal sleep behaviors, like laughter in sleep, from worrying ones?
- What fever and seizure guidance do families receive, and what do they remember in an emergency?
- How do families experience the burden of intensive early therapy?
- How often do caregivers face sudden breathing scares at home, and does training help? In a study of 335 parents of high-risk infants, CPR training reduced anxiety and burden and increased their sense of control [12].
Several of these could become student theses, survey studies, or discussion material for a narrative medicine course.
Ethics first
The child at the center of the book cannot consent. The prospectus commits to treating the memoir only as a published work, never seeking clinical records, and adding no identifying detail beyond the book itself [2]. The author's role is framed as a lived-experience advisor, not an investigator. Clinical questions belong to independent researchers with no personal stake in the answers, and any study involving families would require ethics review and informed consent.
From the bedside to the lab
The proposed path forward is a university-led team: a clinician or scientist as principal investigator, a humanities scholar shaping the method, and families as advisors. Most research funders require an institutional applicant; the Gerber Foundation, for example, prioritizes infants up to age three but does not fund individuals [13]. The first steps are modest: convene an expert panel, register a formal scoping review, and listen to 20 to 30 caregivers about what nighttime observation is really like [2]. Only after that would anyone test a home device.
A father awake beside a crib is not a data source in the clinical sense. He is, though, a precise witness to a gap between what a family can see at home and what a doctor needs to know. The next step is not another reading of the book. It is putting these questions in front of the experts who can answer them.
The full prospectus is available at doi.org/10.5281/zenodo.22927886. Learn more about the book at thesilence.us. Researchers and educators interested in collaborating can reach the author at atm.khan@niyanfoundation.com.
This article discusses research questions only. It is not medical advice, and it evaluates no clinician's or institution's care.
References
- Khan ATMH. The Silence Between Two Heartbeats. 1st ed. Barnes & Noble Press / Lulu; 2026. ISBN 979-8-18255-919-5.
- Khan ATMH. From Lived Experience to Research Questions: A Medical Humanities Prospectus Inspired by The Silence Between Two Heartbeats. Final Copyright Edition; September 2026. doi:10.5281/zenodo.22927886.
- Pressler RM, et al. The ILAE classification of seizures and the epilepsies: modification for seizures in the neonate. Epilepsia. 2021.
- Malone A, et al. Interobserver agreement in neonatal seizure identification. Epilepsia. 2009.
- Karamian AGS, et al. Neonatal seizures: practical approaches to classification. Journal of the International Child Neurology Association (JICNA). 2022.
- Tatum WO, et al. Predictive value of outpatient smartphone videos for epileptic seizures. JAMA Neurology. 2020.
- Smartphone video and lead time to diagnosis of infantile spasms. Journal of Pediatrics. 2023.
- Home-video EEG monitoring in a pediatric setting. Heliyon. 2024.
- Pavel AM, et al. A machine-learning algorithm for neonatal seizure recognition: a multicentre, randomised, controlled trial (ANSeR). Lancet Child & Adolescent Health. 2020.
- Early predictors for later epilepsy after therapeutic hypothermia for neonatal encephalopathy. 2026.
- Anxiety and post-traumatic stress in neonatal-unit parents: a meta-analysis. As cited in ref. 2.
- Moser DK, Dracup K, Doering LV. Effect of cardiopulmonary resuscitation training for parents of high-risk neonates on perceived anxiety, control, and burden. Heart & Lung. 1999.
- The Gerber Foundation. Research grants and eligibility guidelines. gerberfoundation.org.