Proceedings of a Workshop—in Brief

Convened April 21, 2026

Achieving a Just Response to Sudden Unexpected Infant Deaths
Proceedings of a Workshop—in Brief

On April 21, 2026, the Committee on Science, Technology, and Law (CSTL) of the National Academies of Sciences, Engineering, and Medicine held a workshop in Washington, DC titled “Achieving a Just Response to Sudden Unexpected Infant Deaths.” Sudden Unexpected Infant Death (SUID) denotes the death of an apparently healthy child under the age of one from undetermined causes.¹ It is an umbrella term applied to the sudden death of an infant at the outset of an investigation, prior to the final certification of causes that include sudden infant death syndrome (SIDS), death from unknown or unexplained causes, and death from accidental suffocation and strangulation in bed (ASSB).

SUID cases are distressing events that trigger a complex series of crucial, time-sensitive interactions involving parents, law enforcement, public health officials, and the medical and medicolegal death investigation communities. Due to the sudden, unexpected nature of these deaths, law enforcement personnel are required by law to investigate for neglect or malfeasance—though these are infrequent in cases of SUID. Investigations treat parents and other caregivers as suspects—regardless of whether the death was the result of a criminal act. Investigations must, therefore, determine cause of death while minimizing trauma to the family of the deceased.

The one-day workshop examined multidisciplinary responses to SUIDs. It was convened to (1) consider responses to SUIDs in the United States and other countries, including by law enforcement, emergency medical professionals, physicians, medicolegal death investigation professionals, and public health officials; (2) identify elements of an optimal response to SUID, including with regard to family social assessment and support and the integration of medical research into diagnoses of the cause of death; (3) review the mandatory legal requirements in place in the event of child death; and (4) describe the rights of parents and caregivers in fatal health events involving dependent infants and children.²

In her welcoming remarks, CSTL co-chair Martha Minow (Harvard Law School) said that SUID cases involve “both tragedy and ambiguity.” As such, she said, the topic raises many difficult questions. When are these medical events and when are they legal or even criminal events? What protocols make sense given the challenges in differentiating between natural, accidental, and intentional causes? What is just for the surviving families? What advances in

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scientific and medical knowledge can prevent tragedies? How can desire for accountability be balanced against the needs of affected families? Should the medical community or the law enforcement community be the first responders? How can fields coordinate in ways that ensure not only care and kindness but also rigor and accountability? What can individual states learn from one another? What can the United States learn from other nations?

During its 25-year history CSTL has not examined SUID, but it has deep experience in bringing legal and law enforcement communities together with scientific and medical communities, said Minow, having overseen reports on such topics as the scientific underpinnings of forensic science disciplines, the state of research on eyewitness identification, and lessons learned from death-in-custody investigations.

FINDING A PATH FORWARD

“As a pediatrician, I have seen the catastrophe that is sudden, unexpected death in infancy,” said Joshua M. Sharfstein (Johns Hopkins Bloomberg School of Public Health), chair of the workshop planning committee.³ “I have had a front row seat to how devastating that is for families and how that pain lasts for years.” Responses can include feelings of guilt “that sometimes turn inward unnecessarily,” anger, and a search for someone or something to be held accountable.

But responses can also include “enormous compassion, enormous empathy, fantastic caring, and ultimately a desire among people to try to figure out ways to prevent this from happening to others,” said Sharfstein. SUID cases are not only terrible tragedies for individuals but a public health challenge facing everyone. “That is the spirit of this meeting: to try to look at this problem in its totality and find a path forward.”

COORDINATING AND IMPROVING RESPONSES TO INFANT DEATH

All professionals involved in the response to SUID must balance compassion and investigatory rigor. These dual responsibilities are reflected in the work of the U.S. Department of Health and Human Services (HHS), said Stephanie Haridopolos, the Principal Deputy Assistant Secretary for Health Policy and the Chief of Staff and Senior Advisor to the Office of the Surgeon General. Agencies across HHS play critical and complementary roles. The Centers for Disease Control and Prevention (CDC) monitors the scope and circumstances of deaths through national surveillance systems and supports standardized approaches to death investigations. Research at the National Institutes of Health (NIH) seeks to better understand the biological and environmental factors that contribute to SUID. The Health Resources and Services Administration (HRSA) supports state- and community-based systems, including prevention programs, that translate knowledge into action. “Together, these efforts form a coordinated, federal approach, one that connects data and science and practice in a shared effort to reduce the tragedies and to ensure that each investigation is conducted with both rigor and the care the circumstances demand.”

Haridopolos noted that the national response to sudden infant death has evolved over time. In the latter half of the twentieth century, she said, rising rates of what was termed SIDS prompted increased attention from medical and public health officials. The Back to Sleep campaign⁴ begun in 1994 by the Eunice Kennedy Shriver National Institute of Child Health and Development became a clear example of what can happen when science, communication, and partnerships come together in service of prevention. A policy statement from Surgeon General Joycelyn Elders elevated safe infant sleep from a clinical recommendation to a national public health message. Later, Surgeon General David Satcher extended and reinforced the safe sleep message.

As it began to be recognized that cases of SUID involve a combination of factors, including biological vulnerability, environmental risks, and sleep-related circumstances, attention shifted from SIDS to SUID. Medicolegal examinations of these deaths involve interconnected organizations at the local, state, and federal levels,

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beginning with first responders and continuing through careful death scene investigation, standardized reporting, multidisciplinary case review, ongoing research and surveillance, and in some cases coordination with Child Protective Services (CPS). “Each part of the system plays an essential role in determining cause of death and in ensuring that every case is approached with consistency, quality, and care,” said Haridopolos. At the same time, Haridopolos added, many challenges remain. The investigation and classification of infant deaths across jurisdictions remain variable. Differences in training, resources, and systems can affect the consistency of investigations and the completeness of the information that is collected. She noted that persistent disparities in infant death rates persist across communities.

By bringing together those with a wide range of expertise, the workshop provided an opportunity to consider approaches for improving the consistency of SUID investigations, enhancing the quality and use of findings to prevent future deaths, and ensuring that responses are carried out with fidelity and compassion, said Haridopolos. “Getting the response right, case by case, is a critical building block for developing a clearer understanding and making progress over time.”

Haridopolos said that the Back to Sleep campaign and its successor efforts lowered the rate of SUID by 50 percent since 1994. “If you actually equate that over the past 32 years,” Haridopolos calculated, “that’s 80,000 babies that were saved. And by day, then that’s eight babies saved each day since then—that’s eight families greeting their babies in the morning in eight communities that were spared from responding to tragedy every single day for the past 32 years…. That progress reminds us of what’s possible with science and communication and partnerships that can come together in a coordinated way, and it underscores the opportunity in front of us now to build on that foundation.”

PREVENTING HARM

The workshop featured a second HHS speaker, Alex J. Adams, Assistant Secretary for Family Support and Head of the Administration for Children and Families (ACF), who reiterated Haridopolos’s commitment to addressing the public health challenges of SUID. Adams described ACF as part of “the human services side” of HHS. Its responsibilities include federal financing of foster care, adoption assistance, guardianship assistance, and cash assistance through such programs as Temporary Assistance for Needy Families. “Our mission is grounded in an urgent goal, and that’s to keep children safe, strengthen families, and, most importantly, prevent harm before it occurs.” A particular goal of the current administration, Adams said, is to reduce bureaucratic barriers to timely intervention. He cited the Family First Prevention Services Act⁵ as legislation that “shifted federal resources upstream” and cleared the way for quicker intervention and harm prevention.

“SUID presents a fundamental challenge,” Adams said. “Risk,” he continued, “is often visible but…not actionable by child welfare systems.” Unsafe sleep environments, caregiver impairment, and prior contact with child welfare systems could all predict higher rates of SUID. “Yet these factors often do not meet statutory thresholds for intervention. Data systems are fragmented, investigations are inconsistent, and, once tragedy occurs, systems are not always designed to learn effectively.” He noted that law enforcement personnel have reported frustration at a lack of intervention from child welfare departments that “does not match the level of danger.”

SUIDs are among the most difficult child fatalities to classify and prevent, and “legal factors often intersect” with aspects of child safety. Adams suggested that fetal and infant mortality review teams could be empowered across states to better classify risk. “All of this reinforces a critical point for child welfare,” he said. “There are prevention opportunities, not just investigative cases.”

ACF gathers data in the National Child Abuse and Neglect Data System (NCANDS). The data are used to examine trends in child abuse and neglect across the country. NCANDS supports state public health departments through individualized technical assistance, technical briefs, webinars, and peer-to-peer collection. Data collection and continuous quality improvement efforts at

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both the state and federal levels can strengthen prevention strategies and improve outcomes for infants and families.

Adams noted that the Child Abuse Prevention and Treatment Act (CAPTA)⁶ provides federal funds to states for child maltreatment prevention and assessment. While CAPTA does not define SUID as child maltreatment, “there are important connections,” such as case data analysis and investigation standardization, “between CAPTA and the work that you are talking about today in the context of child welfare.” The availability of CAPTA funds is, however, relatively limited given the medical scope of SUID cases and research.

In response to an audience question about national data collection, Adams acknowledged that current NCANDS datasets could be updated more frequently or possibly shrunk to fewer, more informative datapoints. “One of the biggest challenges with child welfare data right now,” he said, is that “we have 200 data points that get reported to us […but] it’s two years out of date by the time it’s on my website.” Adams would like to shift data collection practices to encourage more timely reporting. “We’re going to continue having those 200 data points that are reported,” he said, “but I’m trying to shrink what are the 10 most important things to get reported monthly, in addition to the 190 other data points…. We’re trying to work with states on increasing the frequency of high-value data, and today we’ve had 15 states…commit to reporting certain subsets of data more frequently.”

ORGANIZATION OF THE WORKSHOP

The remainder of the workshop was structured as four panel sessions followed by discussions with the committee and questions from the in-person and online audience.

The first session provided an overview of SUID and how such deaths are investigated. Its goals were to create a baseline understanding of SUID and orient workshop participants to the scope of and actors involved in investigations of SUIDs in the United States. The second session explored limitations of the current system, including problems with current approaches to SUID and the consequences of these problems. The third session discussed international approaches to SUID, with a focus on the United Kingdom and Norway. The final session considered elements of an optimal approach to SUID.

At the conclusion of the workshop, members of the workshop planning committee provided reflections on what they had heard and suggested possible directions for the future. (See BOX 1 at the end of this proceedings for a list of suggestions for action from individual workshop participants.)

WHAT IS SUDDEN UNEXPECTED INFANT DEATH AND HOW ARE SUCH DEATHS INVESTIGATED?

Workshop planning committee member Mary Beth Howard (Johns Hopkins School of Medicine) moderated the first panel session. She called attention to two broad issues: when definitions, data systems, and investigative processes align and, more importantly, when they diverge; and how variation in investigative processes shapes understanding of cause of death and families’ experiences.

In 2024, said panelist Carrie Shapiro-Mendoza (Rollins School of Public Health, Emory University), about 3,400 deaths were attributed to SUID—a rate of about 1 in 1,000 infants. Shapiro-Mendoza said that the rate has not changed meaningfully in the last 25 years, though the 1992 American Academy of Pediatrics (AAP) recommendations⁷ and the 1994 Back to Sleep campaign produced substantial declines in the number of infant deaths in final years of the 1990s. She noted that a portion of SUID cases can be attributed to SIDS, in which the death of an apparently healthy infant under one year of age is unexplained after a thorough investigation, including scene investigation, an autopsy with ancillary testing, and a review of clinical and medical history. SUID, in contrast, is a surveillance term that includes underlying cause-of-death codes from vital records that capture deaths from SIDS, deaths from unknown or undetermined causes, and deaths from ASSB. Shapiro-Mendoza said that, while SIDS rates continued to decline after the year 2000, deaths from unknown causes and ASSB deaths rose. As a result, the overall SUID rate remained about the same from 2000 to the present (see FIGURE 1).

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Shapiro-Mendoza noted that the three categories of deaths that make up SUID (see TABLE 1) are identified in vital statistics data using cause-of-death codes derived from death certificate information. Medical examiners and coroners document the cause of death using terminology based on their investigation and determination. The terms they document are subsequently coded by the National Center for Health Statistics and entered into the National Vital Statistics System. Shapiro-Mendoza noted that incomplete investigations and differences in classification or terminology can cause deaths to be labeled in different ways, affecting the coded death designation within a SUID case.

Shapiro-Mendoza said that there is no biological marker for distinguishing between a SIDS death, a death with an unknown or undetermined cause, or a suffocation death. While suffocation is an “explained death,” pinpointing what caused suffocation is often difficult from death certificate data alone. Soft bedding, overlay by someone else in a bed, entrapment between pillows, or wedging between a mattress and the side of a crib can cause suffocation. Most SUID cases are unwitnessed and scene investigation data often do not fully describe the circumstances surrounding the death, including where and how the infant was found. Because there are no agreed upon markers from an autopsy to distinguish SUID

TABLE 1 Classification of SUID Cases*

* Classification depends on the quality of the investigation, interpretation of scene evidence, and death certifier preferences. There are no biological markers at autopsy to distinguish these SUID categories.

SOURCE: Presented by Carrie K. Shapiro-Mendoza, Adjunct Professor and Health Policy and Management Scholar, Rollins School of Public Health, Emory University, April 21, 2026.

causes, classifying the cause of these deaths is difficult, Shapiro-Mendoza said.

Shapiro-Mendoza presented data on SUID rates in the United States. She noted that SUID rates vary demographically. Massachusetts, she said, had the lowest state per capita SUID rates from 2021 to 2023 at 42 infant deaths per 100,000 live births. SUID rates in Mississippi were more than six times higher, at 260 deaths per 100,000 live births. SUID frequency varies by race. Non-Hispanic American Indians or Alaskan Natives and Non-Hispanic Black or African Americans have SUID rates two to three times those of Non-Hispanic White Americans, who in turn have higher rates than either Hispanic or Latino Americans or Non-Hispanic Asian Americans. Shapiro-Mendoza suggested that differences in regional health care resources and localized public health messaging may explain these disparities. She noted that the SUID rate is also higher among preterm infants and that SUID occurs more frequently during the first six months of life, peaking at 1–4 months.

While there have been improvements in how SUIDs are classified, gaps in collected data and inconsistent classifications affect “the interpretation of trends and resource allocation. Surveillance is essential to detect emerging risks and to guide our interventions and prevention efforts,” Shapiro-Mendoza said.

The session’s second panelist, medicolegal death investigator Lauri W. McGivern (Vermont Department of Health), described how death investigations are conducted in her jurisdiction in SUID cases. Investigatory procedures are not standardized across jurisdictions in the United States, she said. In some jurisdictions, coroners conduct death investigations. Others employ medical examiners or a hybrid system. Procedurally, depending on where an infant dies, the type of response and investigation may differ and may depend on resources, funding, and the availability of education, McGivern said.

In 2007, the CDC developed a training regimen for personnel involved in SUID investigations. According to McGivern, the training manual⁸ for the regimen sought to

• teach investigators how to conduct a comprehensive infant death scene investigation;
• provide guidance on witness interviews and doll reenactments;
• provide instructions for developing a clear, thorough narrative death scene report for the forensic pathologist;
• build skills needed to accurately complete the Sudden Unexpected Infant Death Investigation Reporting Form during and after the scene investigation; and
• support both on-scene investigation and post-scene documentation.

After an infant dies, the primary investigative team can consist of professionals that include medical examiners, coroners, medicolegal death investigators, and law enforcement officers. In some states, agencies such as a department of children and families are involved in the response (and representatives from these agencies sometimes visit the scene). The scope and nature of the response, said McGivern, typically depend on resources and jurisdiction.

McGivern said that all members of a response team must balance the rigor of gathering evidence with compassion for families of the deceased infant, especially during direct questioning. When the investigative team sits down with a family for the first time, all personnel should be introduced and share the scope of their duties, she said. “These are people who are in shock, who are grieving,” she said. “They may not hear our words, but they definitely hear the tone of our voice. The approach is really important.”

The deceased infant is typically transported to an emergency room early in an investigation as important postmortem changes can occur quickly. This means, McGivern said, that “from the moment the infant dies, the clock starts ticking.” She noted, for example, that “lividity patterns” (skin discoloration caused by blood that settles after death) can assist investigators in understanding the position of an infant at time of death.

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Responding personnel interview family members and examine the scene of death. Position is often an important determinant for cause of death, and doll reenactments can be used to reconstruct an infant’s position when found. McGivern said that doll reenactments should be clearly and compassionately explained to parents before they are performed.

SUID cases need to be handled in a systematic, standardized way, McGivern said. “Yes, the circumstances may vary,” she said, but there are “tools to use at every scene every time.”

McGivern suggested that the expertise of professionals working in this field contributes to a growing system of knowledge aligned toward future harm prevention. “Death investigation is public health,” she said, referencing the need for consistent, metric-based improvement, “so we need to make sure that we have a standardized approach.”

Discussion

Howard asked how death investigators can ensure equity across SUID investigations, given the wide disparities in SUID rates cited by Shapiro-Mendoza. Increased training and resources are of the utmost importance, McGivern replied. While equity can be promoted by the standardization of all SUID case investigations, “there are disparities around resources and funding in different systems and jurisdictions.”

In response to an audience question, the session’s panelists noted that immigrant and Black and Hispanic communities can have asymmetric experiences with first responders and law enforcement personnel that affect SUID investigations. Social workers and interpreters can assist with resource distribution and communication, particularly if other agencies, such as departments of children and families, have already been integrated into these communities.

An audience member asked about a standard protocol for determining the probability of abuse. If abuse is suspected, McGivern said, “the investigation may look different and may be led more so by law enforcement depending on initial findings at the emergency department.”

Multiple workshop attendees asked about changes made to the scene of death. McGivern said that death scenes can be altered, which is why it is important for law enforcement to maintain control of the scene until all evidence has been processed.

In response to an audience question about the frequency and usefulness of doll reenactments, McGivern said that families have been very open to the use of dolls, but how a family is approached is critical. Letting the family know why the reenactment is important and why you are asking for a reenactment is key.

A question was raised about families being able to hold their infants after they have been pronounced dead. While it is important to have someone in the room during this time, such as a law enforcement professional or a death investigator, McGivern said, families should not be denied the opportunity to hold their child. This is an important part of the grieving process, she said.

LIMITATIONS OF THE CURRENT SYSTEM

The workshop’s second panel session considered limitations in current approaches to SUIDs—and their consequences. Workshop planning committee member Peter Stout (Houston Forensic Science Center), who manages complex criminal investigations in Texas, moderated the panel and described its objective as: “To help people understand just how complicated these issues are, how many steps there are, and what limitations we have to deal with.”

Florencia Segura (Einstein Pediatrics) provided an intimate look at the reality of a child’s sudden death. At 7:20 AM on May 21, 2024, her 18-month-old daughter, Rosie, was found unresponsive. “We are a two-physician couple,” said Segura, “and we had every professional advantage. We were treated well by the police, EMS [emergency medical services], and by the death investigator. But it still wasn’t enough, and that’s why I’m here to advocate and talk about those gaps in the systems.”

After finding Rosie unresponsive, Segura’s husband called 911 as they initiated chest compressions. EMS personnel arrived soon after and pronounced Rosie dead on the scene. “One of the most compassionate things that EMS did for us,” said Segura, “was they warned us that

we would not be able to hold her as soon as the police came. This would probably be the last time we’d see her. This is the last time we could touch her hair. This is the last time we could kiss her.” “Most families,” she said, “don’t get that.”

When the police arrived, said Segura, “Our home transitioned immediately to a death scene investigation.” She and her husband were required to leave the home and stand behind yellow tape for hours with limited information. One of the officers asked Rosie’s primary care provider to sign a death certificate remotely, a “disconnect,” said Segura, which she said would have waived the right to a forensic autopsy and closed the case. A death investigator arrived shortly thereafter and cleared the confusion, stopping the certificate from being signed so that a full autopsy and investigation could take place.

Segura felt immense guilt afterwards. “I kept replaying May 20, probably 100,000 times in my brain, every single moment. I was trying to figure out, ‘Did I miss something?’” When an initial autopsy revealed no abnormalities, Segura and her husband delayed a funeral and reached out through their physician network to try to get more data about potential cause of death, including the results of genomic sequencing. They eventually found Robert’s Program on Sudden Unexpected Death in Pediatrics (SUDP) at Boston Children’s Hospital, which supports grieving families through emotional counseling and genetic testing services. Segura credited the program with helping them feel “less alone,” and said that most families are not aware of its existence.

The panel’s second speaker, Sarah Brand-McCarthy (Boston Children’s Hospital), an attending psychologist working with Robert’s Program, described how she has spent her career advocating for “grief-focused, trauma-informed care” for mothers like Segura. Since the founding of Robert’s Program in 2012, the organization has cared for over 700 families whose children have died without apparent cause. Multidisciplinary experts support families in the short- and the long-term. One of Brand-McCarthy’s own daughters, Molly, died of cancer in 2022 at five years old. “I’m also a bereaved mom who understands the indescribable pain of having your child die,” said Brand-McCarthy. “But a significant difference is that Molly’s death was medically explained. Our family was spared the scrutiny, the uncertainty, and the suspicion that so many families that I care for now have to face.”

The psychological departure point, said Brand-McCarthy, begins the moment the parent picks up an unresponsive child. “That moment is unlike any other in the human experience,” she said. “This is where we need to start, not with a definition, not with a statistic, but in that moment.” Brand-McCarthy said that parents often undergo a peritraumatic response when their child is found unresponsive. Unfortunately, this is the same time that families are required to call 911 and begin interacting with the systems that will ultimately be responsible for the investigation of their child’s death. This occurs at “the absolute nadir of psychological capacity,” Brand-McCarthy said, and it involves, “a severe impairment of executive functioning, attention, and processing speed.”

EMS have a difficult job with SUID cases, said Brand-McCarthy, but best practice is to try to allay family grief. “Oftentimes, [EMS workers] are speaking in codes of their work that people don’t understand, clinical shorthand,” said Brand-McCarthy. “These procedures and words are incredibly important. But there is a family standing in the middle of it, in their home, and many of them can’t understand a word that is being said about their child.” Brand-McCarthy suggested that first responders describe in layman’s terms what they are hoping to accomplish. She noted that there are “disparities in how people are treated depending on what the color of their skin is, where the house is located, and what the house looks like when a team arrives.” This, she said, “can set the tone for very different paths.”

Brand-McCarthy said that there are variances in how much physical contact the family is allowed with their infant. “I have to believe that there are ways that we could [allow contact],” she said, “that would not interrupt the crime scene.” Families, she said, are “viewed through the lens of an investigation, not through the lens of a bereaved family on the worst day of their lives.” Nevertheless, families, long after the initial tragedy, want to remain active participants in SUID investigations. “They want to be at the table. They want access to research. And most importantly, they want to understand what happened.”

Panelist M.J. Menendez (Center for Forensic Science Research and Education), an attorney who advocates for increased resource allocation to forensic science communities, spoke about the diagnostic overlap at play in infant death investigations. As SUID is an umbrella classification for a death that covers multiple possible diagnoses, for forensic pathologists, everything “must be done absolutely and completely in order to rule out everything else and get answers.”

All 50 states require a medicolegal death investigation when deaths are sudden, unexpected, unexplained, or suspicious. “Forensic pathologists,” said Menendez, “tell the truth about life and death in America in a way that no one else can.” Unfortunately, there is a severe shortage of forensic pathologists in the United States. Currently, she said, there are only 862 full-time, board-certified forensic pathologists practicing in the United Sates, but approximately 1,400 are needed to cover the full range of autopsy services.”

Menendez emphasized that the specialized training and expertise required for SUID forensic pathology engenders serious resource gaps between urban and rural areas. She said that the United States has approximately 2,000 medicolegal death jurisdictions served by about 4,120 death investigators: this comes out to one or two investigators per jurisdiction, but some jurisdictions have zero. Further, when it comes to SUID investigations, “Judges, prosecutors, and defenders are often generalists in a world that demands specialization.” Through Menendez’s entire prosecution career, she said, “I never had one minute of specialized training on this.”

Menendez’s last point is important, said panelist Keith Findley (University of Wisconsin Law School), co-founder of the Wisconsin Innocence Project, because of the massive consequences of the outcomes of medicolegal death investigations. “Whether you call it abuse, whether you call it a natural death or an accidental death, or whether you make no decision, it’s going to profoundly affect people’s lives.” SUID cases create a unique interplay between medicine and law, Findley said. “It’s not a diagnosis of what’s wrong with the body, it’s a decision that determines what external factors may have caused that condition in the body, and therefore, almost inevitably, relies on ordinary, non-medical evidence as well as medical evidence.” This, he said, led leading forensic pathologists and their organizations to recognize that the manner-of-death determination, which encompasses abuse in death cases (“homicide” in medical examiner vernacular), is not a scientific determination.

Findley used shaken baby syndrome/abusive head trauma (SBS/AHT)⁹ to illustrate the longstanding “symbiotic relationship” between medicine and law. SBS was hypothesized as a medical condition in 1971 by a British pediatric neurosurgeon, who hypothesized that parents might be unknowingly and unintentionally harming their children by shaking them to calm them, but by 1993 SBS was labeled as “intent by the caretaker to severely injure, if not to kill” by the AAP. “What prompted that shift [in language]?” asked Findley. “It wasn’t in-depth medical research. There wasn’t much research that went into that. It was rather, I believe, the interplay between law and medicine.” It was a case, Findley said, of physicians providing a tool for prosecutors to prosecute suspected child abusers, and prosecutors putting pressure on medical societies to protect children.

Decisions are affected by cognitive biases, which Findley called “the natural human condition.” In addition to subconscious biases, child abuse pediatricians express a mission-bound bias in infant cases toward protecting children from abuse, he said. At the same time, because lawyers are “not specialized” in medicine, they depend on medical investigators and physicians to provide accuracy to the legal fields, especially in cases involving presumed abuse. Both physicians and lawyers must understand and make clear that medical abuse determinations are never definitive; rather, “Clinicians invariably have to make a probabilistic assessment about whether a child was abused or not,” Findley said. “But once you start going down that path, you’re talking about a very subjective determination that is especially subject to the influences of cognitive biases.”

The session’s final speaker, Joseph Drelles (Grand Rapids Police Department), spoke to the “almost impossible job” faced by law enforcement when dealing with a dead infant. Every police jurisdiction operates differently, said Drelles. Regardless of jurisdiction, he cited communi-

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cation as one of law enforcement’s primary roles during a SUID investigation. “Law enforcement is a conduit to everyone that has a lane,” he said. “Medical examiners, families, Child Protective Services, medical professionals—we have to interact with all these touch points to gather our facts” and paint a picture of what occurred based on those facts.

Drelles’s department uses a “victim-centered” approach when responding to infant death cases. Ideally in such cases, the supervisor in charge will bring a full team to a scene (i.e., a representative from CPS, a forensics expert, a medical examiner, and a detective). At the scene, the lead investigator will typically introduce the entire team to the family up front and explain the scope of their work. The goal is to be as transparent as possible while still protecting the integrity of the investigation. Drelles said that team members communicate among themselves during the process to avoid repeating questions that might cause harm or trauma for the family. The Grand Rapids Police Department has a Victims Services Unit (which Drelles believes is rare in law enforcement) made of three civilian advocates who can communicate information to help families navigate next steps.

While compassion is at the forefront in Drelles’s investigations, he acknowledged the need to treat SUID with the detail-oriented approach of a criminal case, because all infant deaths should be treated as suspicious and there is always a chance that the death was, indeed, the result of a criminal act.

With regard to SUID, Drelles noted that there is lack of training across law enforcement. Officers in many counties might not have dealt with infant death and are “being thrust into it with probably zero training.” While there are training modules available—from, for example, the International Homicide Investigator Association—many departments do not have the budget to pay for them. His department, for example, “is out of funds until July 1,” he said.

Discussion

Howard asked why SUID, the leading cause of post-neonatal infant mortality, does not garner nearly as much media attention as gun deaths or drownings. Menendez suggested that, while the narrative around SIDS changed with sleep position in the 90s, “often people don’t want to focus on death, particularly on death that they can’t explain.” Segura agreed, saying, “it makes people uncomfortable, because it could happen to them, and […they] just don’t want to think about it.” While people have heard of SIDS, Segura said, not many people have heard of a child dying above the age of one, like hers did. She added that her case scared people even more, because she herself is a pediatrician. Findley said, “You need to educate people to understand that sometimes, children die for no reason we can discern.”

A workshop panelist asked how law enforcement could be more cautious in drawing conclusions about cause of death, saying, “I wonder if we’ve got into the situation of blaming parents, because it gives an explanation.” Drelles answered that law enforcement personnel can struggle with the barrage of communication during a SUID case. “These are long, drawn-out investigations,” he said, with law enforcement typically communicating information from the medical examiner to a prosecutor’s office. He said that these parties acting in their own lanes, using police as a conduit, can sometimes “muddy the waters” during an investigation. “I think standardization is huge,” said Drelles.

Responding to a question about how law enforcement can “ramp down” the assumption of blame on parents, Drelles said that it is difficult, and that split-second decisions can make a difference, “from losing evidence that can help give context [and] either help to exonerate somebody or prove criminality.” In the end, he concluded, “You want to have that empathy, but you can’t have the empathy dictate your professional job.”

An audience member asked about public health messaging around SUID. Brand-McCarthy said that it is important to advance the messaging around the science of SUID research: “Medicine as we know it today has not given us answers,” she said, “but we’re going to continue to look.”

INTERNATIONAL APPROACHES TO SUDDEN UNEXPECTED INFANT DEATH

Workshop planning committee member Katherine H. Judson (Center for Integrity in Forensic Sciences) introduced a panel session on international approaches to SUID to consider alternatives to U.S. processes.

Joanna Garstang (University of Birmingham) described England’s Child Death Review Process as a mandatory investigative procedure that covers the death of any child from birth until age 18. The process includes a joint agency response from police, health care, and social care workers. This has five aims: (1) establishing, as far as possible, the cause of death; (2) identifying any potential contributory or modifiable factors; (3) providing ongoing support to the family; (4) ensuring that all statutory obligations are met; and (5) learning lessons to prevent future death.

Any child who dies, said Garstang, is immediately conveyed to the emergency department while the joint agency response begins. Initially, uniformed, general police are involved, but the response is rapidly handed over to police officers from the Child Protection Unit, who are trained in child death. These police conduct a thorough scene investigation. It is “very rare,” Garstang said, to use doll reenactments in the United Kingdom.

An information sharing meeting is held a few days after the death. The meeting is attended by professionals who worked with the child or family or who were involved in the child death investigation. The meeting, which is typically chaired by a Sudden Unexplained Death in Infancy (SUDI) pediatrician, includes all relevant investigators, medical and legal, and staff from the child’s school. Families are also offered genome sequencing after an unexplained death.¹⁰

As in the United States, said Garstang, England has a critical shortage of pediatric pathologists. “There’s often a wait of several days before children can now have a postmortem [autopsy], because there just aren’t enough [pathologists] around. Then it takes months for the report to be issued, because there’s a backlog to do their histology and ancillary tests.”

Garstang called for expanded medical resources for SUID investigations. “It’s really important that pediatricians are involved in joint agency response,” she said. “It’s a rare disease, and I can’t understand why a rare disease is investigated by law enforcement rather than by specialist medical professionals.”

During the 1980s, said Torleiv Rognum (University of Oslo), Norway was forced to confront the divide between law enforcement and medical practitioners during a so-called “SIDS epidemic,” when unexplained infant death rates reached 0.24 per ten thousand live births. Until that time, death scene investigations in instances of SUID were carried out by uniformed police officers. If a scene investigation by police did not point to malfeasance, said Rognum, the family of the deceased would receive a letter dismissing the criminal case. “That was all they had,” said Rognum. “This unfortunate routine had to be changed.”

In 1991, Norway’s Attorney General and Director of Health established a new procedure wherein police did not conduct a death scene investigation until an autopsy was completed in a pediatric ward. As SIDS diagnoses became less frequent in the 1990s and other causes of death—such as an asphyxiation—became more prominent, the lack of a scene investigation became problematic. The Norwegian constitution prohibits house searches except in criminal cases, so in the absence of a criminal case, scenes could not be investigated to ascertain whether safe sleeping practices had been employed by the family.

By a one-vote majority, the Norwegian Parliament in 2010 passed legislation to enable “voluntary death scene visits” conducted by forensic doctors and a death scene visitor (an individual with law enforcement education not currently employed by the police) to assist in identifying causes of SUID and preventing future harm to infants. These visits take place within 48 hours of an infant’s death, during the timeframe when autopsies are performed. Families can consent to have tissue samples collected for the purpose of cause-of-death research. When autopsy results are available, the entire investigatory team meets for a “case conference” to make a final decision on the cause of death.

Rognum said that, out of 335 SUIDs from 2010 to 2022, only 33 families refused a voluntary death scene visit. Since 2010, approximately 20 percent of all Norwegian SUID cases have not been followed by any death scene visit or follow-up investigation by either the police or by forensic pathologists, which Rognum identified as a weakness in the current system. “When the police ini-

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tially do not find the death suspicious and abstain from a death scene investigation,” Rognum said, “and the parents do not give informed consent to the scene visit, then there’s nothing.”

Rognum noted that, in a 2018 report, surveys of 31 families who experienced a SUID revealed that 90 percent were satisfied with the death scene visit. Two-thirds said that the visit had been helpful in their grief process following a SUID case. Rognum said that “meeting competent professionals, including the forensic pathologist” and receiving crucial information “that can relieve them from unnecessary guilt feelings” were key factors influencing satisfaction.

Discussion

Judson asked Garstang about the ways that law enforcement personnel in England classify a death scene for abuse potential and when England’s specialized child abuse pediatricians get involved in a case. “The child abuse pediatrician question is slightly different [with] sudden infant death,” said Garstang. “England has taken the view that child abuse is the responsibility of everyone, and all pediatricians need to be trained in child abuse.” Pediatricians who assist in cases of sudden infant or sudden child death, which are not commonly cases of abuse, have undergone further training and understand the child death review process. General pediatricians who are on call should not be compelled to deal with a full SUID investigation, Garstang said, though that happens sometimes in rural areas.

Judson asked about the accommodation of family members and other relations in hospital rooms during English SUID investigations and whether their presence causes problems. “If the case presents as an out-and-out homicide,” said Garstang, “of course we’re not going to allow everyone in to see that child.” But most SUID cases are not homicides. Garstang noted that families are supervised while in hospitals.

If families do not consent to a death scene visit in Norway, said Rognum, there are no consequences. Garstang added that, in the United Kingdom, “we cannot make [the parent] be there” if a death scene visit is too difficult to bear.

Judson said that “it’s almost unheard of” to have both forensic pathologists and pediatric pathologists present during a SUID examination in the United States. Garstang said that UK pediatric pathologists have specialized training to investigate SUID cases, whereas forensic pathologists specialize in a variety of criminal cases. Rognum said that Norway does not have dual training tracks per se, but that certain forensic pathologists specialize in pediatric cases.

A workshop participant asked how pediatricians in the United Kingdom feel about increased involvement in SUID cases (as compared to pediatricians in America). “It was a battle getting pediatricians involved 20 years ago,” Garstang, herself a consultant community pediatrician, said, noting that children in the United Kingdom see family doctors rather than pediatricians. Child death pediatricians can deal with cases on a specialized basis. “We haven’t had a relationship with these families beforehand,” Garstang said. “They’re not our patients. We’re picking them up only after they’ve died.”

Rognum said that the Norwegian medical community was “brought together” by the SIDS epidemic of the 1980s. “We all tried to cooperate to solve that problem,” he said. “Now there’s much less of it.”

Sharfstein asked about “triage” between law enforcement visits and visits by the medical community. “Is it the case that they have to get in right away to figure out whether there was malfeasance?” he asked. “Or is it okay to wait a few days and have a different kind of visit, still looking for potential problems?”

Garstang said that UK police are involved from the initial emergency call and can quickly judge if a scene should force the case down a “homicide route.” In most cases, she said, “there’s nothing unexpected in the home, apart from the fact that SUID is a disease of poverty, so these are often struggling families.” If things come up in the emergency department that suggest child abuse, said Garstang, “everything changes.” Further, UK law states that if a parent who has been drinking alcohol shares a bed with a child and that child dies, it is a criminal offense, “and that happens surprisingly commonly.” Such cases lead to arrest.

While there are protocols, Garstang observed, “All cases are gray cases. There’s often a lot of discussion between pediatricians and police officers about what the best way of managing a particular case is, because nothing is ever straightforward.”

In response to questions about doll reenactments, Rognum and Garstang expressed support for the practice. “I think they’re really helpful,” said Garstang. “We don’t do them enough in the UK. I think we have got a little bit soft into how we do some of our death scenes. We’re out there looking for risk factors without really seeking to understand the circumstances of death.”

ELEMENTS OF AN OPTIMAL APPROACH TO SUDDEN UNEXPECTED INFANT DEATH

The workshop’s final panel session focused on optimal approaches to the investigation and prevention of SUID. It was moderated by workshop planning committee member Rachel Moon (UVA Health Children’s). To generate discussion, Moon began the session by presenting a “reset vision” for what an approach to SUID might look like.

Whereas the current framework often treats families as “guilty until proven innocent,” said Moon, a more sympathetic approach might treat SUID as a “health care crisis” or a “health care event.” During a SUID case, said Moon, “the home, the infant’s last sleep space, becomes a crime scene” and “parents often feel as though they are being treated as potential murderers.” Moon suggested that public health messaging around SUID can be confusing and can lead to more guilt in families. She called for a family-centered approach where parents can be with their infants and each other.

Moon said that there is a need for a better approach to obtaining consent for tissue collection. “We are desperately in need of tissue for research purposes,” she said. But when families are pressed for consent in a moment of supreme grief, they are less likely to provide it. Moon suggested that both medical and law enforcement professionals should be involved in the consent process and that requests for tissue collection should be made only after initial interviews and conversations about next steps. With their permission, families could be referred to a regional center that has medical expertise (including in genetics) and bereavement support for families, she said.

A complete evaluation is critical, Moon said, or we risk missing family genetic disease, potential maltreatment, public health threats, public health trends and opportunities for prevention, and product safety issues.

Additional clinician training is needed, Moon said, and boundaries between medical and legal roles need to be clarified. “It will be a learning curve, and change is hard,” she said. Moon acknowledged that paying for changes associated with approaching SUID as a “health care crisis” or “health care event” will be challenging. Currently, “there’s huge variability in what health insurance pays for” and some families do not have health insurance. She suggested that some kind of standardized and publicly supported funding mechanism will be needed to ensure equity.

The first session panelist, Elizabeth Bundock (State of Vermont), described the resource- and personnel-driven realities she has seen throughout her career as a medical examiner. She began by explaining scene investigation protocols at the onset of a SUID case in Vermont. “Scene investigations,” she said, need “to be performed by trained personnel, ideally medicolegal death investigators with pediatric-specific expertise, in conjunction with law enforcement, and, when appropriate, CPS as well, so that both the forensic and evidentiary processes are preserved.” SUID investigations have a major public health dimension, Bundock added. She noted that preventable risks are recognized during scene investigations, and that surviving family members receive additional support and services from communities and agencies at the onset of such investigations.

Bundock said that initial interviews are critical for all parties involved in an investigation but that they “must be non-accusatory and empathetic. Investigators must explain to families what is happening.” She suggested that specific training and mentoring can improve interview methods that are trauma-informed yet give personnel the ability “to escalate the investigation if concerns for neglect or abuse or homicide start emerging.” Although scene investigation provides key data early on, initial autopsy results take between 24 and 48 hours, and toxicology, ancillary studies, and final reports can take many weeks.

A comprehensive postmortem evaluation includes both external and internal examinations with full documentation, a microscopic evaluation of all the major organ systems, and a sub-specialist assessment of the brain and the heart when indicated. Ancillary tests may include toxicology testing, microbiology testing, metabolic screenings, and genetic testing. In cases of SUID, a complete radiographic skeletal survey is standard, after which, she said, “specialized consultations with pediatric pathologists, neuropathologists, cardiac pathologists, and geneticists should be obtained as needed. All of this is finally integrated through a clinical pathologic correlation, bringing together the scene, the history, the autopsy, and the lab data.”

During investigation of an unexpected, sudden death, said Bundock, “family interaction is an essential step, and it happens at multiple points.” Families should not be misled or forced to backtrack at any point during an investigation, she said, and “[t]here should be no premature conclusions about causation given at the scene or in the emergency department.” Bundock added that medical examiner/coroner offices should have a responsibility to help connect families with resources such as bereavement services. She referenced a text from the National Association of Medical Examiners Panel on Sudden Unexpected Death in Pediatrics with multidisciplinary consensus guidelines for SUID investigations, adding that the guidelines can be used in conjunction with the CDC training manual for scene investigations.¹¹

Bundock said that the quality of SUID investigations can be improved by strengthening the death investigation workforce and implementing standardized, auditable protocols. She noted that these core improvement strategies are “not unique to pediatric deaths. Jurisdictions that succeed in pediatric death investigations are really doing these things for all their death investigations.” She noted that consideration should be given to building a “regional consultation model” that can bring SUID investigation expertise and resources to areas lacking those resources.

The second session panelist, Meg Sullivan (Maryland Department of Health), reiterated that addressing SUID “is incredibly complex and requires a lot of different players. There’s no doubt that everyone needs to be at the table.”

Sullivan described the organizational structure for public health services in the State of Maryland, observing that public health services must be oriented toward translating lessons learned from SUID casework into community impact. In Maryland, the public health dimension of SUID emerges from a triple-pronged interplay between the Office of the Chief Medical Examiner, Child Fatality Review teams, and local health departments. “Using our public health surveillance and partnering with law enforcement and with our hospital and behavioral health initiatives can lead to policy and statutory changes that focus on prevention going forward.”

Sullivan referred to a 2013 report from the Maryland Office of the Chief Medical Examiner that identified crib bumpers as a contributing factor to SUID. Later that year, Maryland became the first state in the United States to ban crib bumpers. A national ban followed a few years later. She said that the thoroughness of the Maryland Medical Examiner’s office was key in these positive public health outcomes.

Child Fatality Review teams are critical to in-depth SUID investigations in Maryland, Sullivan said, because they are the personnel who gather medical data on the ground. “We need to have a data-informed approach [to SUID] and then use it to identify trends and target prevention.”

Session panelist Stacey M. Miranda (State of Connecticut) spoke about how the families of deceased children interact with Connecticut courts and crime units. Prior to her current job in conviction integrity, Miranda met with a multidisciplinary team at the Special Crimes Unit every two weeks to discuss new cases of child abuse or neglect, including child deaths. Through these meetings, she said, “We would ensure that every agency involved with the family was coordinating its response to prevent further trauma to the child and the family.”

Connecticut has a centralized Office of the Chief Medical Examiner with 11 full-time, board-certified forensic pathologists. Miranda said the office has greatly

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expanded personnel and training since she began working for the state. “There are now 19 [medicolegal death investigator] positions at that office,” she said, “and every one of them is trained in Sudden Unexpected Infant Death investigations within one year of their hiring.”

Miranda said that the initial communications between investigators and families are perhaps the most important piece of a SUID case. It is critical that “investigators and police recognize that this is a tragic event and needs to be approached with great sensitivity,” said Miranda. “Grieving families have the right to an investigation that is thorough and complete, that allows for the most complete explanation and is non-accusatory.” Law enforcement needs to conduct thorough and consistent investigations that work toward justice.

These investigations should optimally include scene reenactments, Miranda said. But at the same time, “the family needs to know that just because the police are involved doesn’t mean they are being accused of anything. We all have a duty under the law to investigate what happens.”

Since 1995, Miranda said, Connecticut’s Child Fatality Review Panel has been “charged with reviewing unexplained or unexpected circumstances of the death of any child under the age of 18 who has received services from a state department or agency addressing child welfare, social or human services, or juvenile justice.” In 2023, state legislation instituted an Infant Mortality Review Committee, which Miranda said was “a specialized, confidential, multidisciplinary program managed by the Department of Public Health to examine the deaths of children under the age of one, specifically to identify gaps in care and reduce health disparities.”

Miranda emphasized the need for investigative caution. If an arrest is made in a case of SUID, “similar to sexual assaults, it’s ruining somebody’s life,” she said. Prosecutors know that, because of the high stakes involved, these investigations need to be handled with great care. “Medical professionals, law enforcement, and other community agencies in Connecticut can develop the relationships and training necessary to have thorough, coordinated, and complete investigations.”

The session’s final panelist, Richard Goldstein (Boston Children’s Hospital and Harvard Medical School), asked the workshop audience to remember that a just response to SUID cases involves recognizing and treating unequal situations unequally—for example a child abuse death versus an unexplained infant death where there is little concern for neglect or abuse. He urged professionals on all sides of an investigation to “offer compassion and sympathy, protection for [the family’s] rights at a vulnerable time, and honor and respect for their duties as parents.” Goldstein said that the initial examination as to whether a criminal act has occurred need not conflict with a compassionate response and attention to personal medical details. “To me, the important issue is who gets to make the call about whether to proceed with an eye toward prosecution or an eye toward medical evaluation and support, and under what set of guidelines.”

In Goldstein’s opinion, current approaches to SUID investigations often “interrupt the normal supports” for families after a child’s death. SUID often separates parents and children, he said. “It makes the home a crime scene. It frequently puts the custody of other children in question. It impinges on [a family’s] need to hold their baby and openly experience the emotions of acute loss.”

All these concessions, said Goldstein, seemingly come from differences in what parents require in a moment of extreme grief versus what society and the law demand. “This whole mechanism exists to make sure that there’s been no wrongdoing,” said Goldstein. As for understanding why the infants died unexpectedly, “what we talk about in our corner of the world are rare and undiagnosed diseases, and public systems don’t have the resources to [approach these sorts of diseases] well.” Parents want to know why their child died, Goldstein said, if there was anything they could have done differently, and how their family can move forward.

One way to shift the direction of the approach to SUID cases, said Goldstein, would be to develop three or four national centers of excellence across the country. “That’s the model for the Undiagnosed Disease Network that came out of the NIH for people that are lacking explanations for disease.” These centers could help with research as well as tissue and genomic testing, as most medical

examiner offices do not have the resources to fully utilize pediatric samples. Goldstein suggested the need to examine procedures for research consent, as many families are too deep in grief to give informed consent when the question is typically asked. “They’ve been through so much; they just want you to leave their baby alone,” he said. “But later, almost universally, they wish that the tissues were available for research.”

Goldstein discussed attitudes around suffocation diagnoses. The use of the word suffocation implies a death event with struggle and terror, he said, and when that word is used in the context of the death of a child, “we are condemning [the family] to a terrible life of regret and self-blame.” Goldstein said that medical examiners rarely see signs of acute suffocation and suggested that everyone in the field of SUID investigation should be more careful assigning this word to deaths. “SUID researchers are not researching suffocation,” he said. “We are trying to understand why infants do not respond to modest threats, like their face being down, and when they respond to low oxygen or elevated carbon dioxide, why they don’t free themselves from the threat. It’s a very different problem than suffocation.”

Goldstein said that the attitude toward suffocation arose during the 1994 Back to Sleep campaign. “I totally, totally support Back to Sleep advice,” he said. “What I’m saying is we should be a little bit more circumspect when it comes to ascribing mechanisms to deaths we don’t really understand.” He brought attention to structural biases by showing data that SUID cases involving Black families were far more likely to be assigned a suffocation diagnosis than SUID cases involving White families.

Discussion

Responding to a question about legal or medical errors in SUID investigations, Moon said, “When you build any kind of system, it has to be iterative, and you have to use a quality improvement approach. You have to always be evaluating what’s happening and thinking about how we can make this better.” Goldstein noted that timelines for medical examiner reports have historically been very long but are being addressed through accreditation standards.

A member of the online audience asked about the language used around SUID cases and whether “uncertain” or “concerning” death could be used instead of “suspicious” death to alter linguistic notions of criminality. Miranda said that when detectives are trained to treat SUID cases as potential homicides, it is not necessarily because the death is a homicide but because they have been instructed to investigate the death with the highest level of scrutiny. She suggested that “uncertain” might be a better descriptor than “suspicious” in these cases.

Multiple attendees asked questions related to proposed centers of excellence—for example, how many were envisioned, what expertise would be represented, and how funding mechanisms might operate. Both Bundock and Goldstein suggested multiple regional centers across the country might, as Bundock stated, fill “the gap when investigators or pathologists have limited experience.” Garstang noted that France employs a regional center model for SUID, with six centers across the country. Goldstein suggested that such “centers could augment public systems and concentrate resources that are not freely available to them.”

Segura expressed her support for regional centers of excellence, noting that without the assistance—bereavement support, genetic testing, and facilitation of additional contact with the medical examiner—provided by Robert’s Program, she would have faced even more difficult family planning decisions. “There’s no way we would have had another child” without these resources, she said.

CONCLUDING THOUGHTS FROM THE WORKSHOP PLANNING COMMITTEE

To conclude the workshop, members of the workshop planning committee offered closing reflections.

“We should not traumatize the parents,” said Rognum, “but we should show respect for the legal protection of the dead infant. Both are necessary.” He recalled a Norwegian death scene investigator who won over families by saying, “We are here, in cooperation with you, to turn every stone to find the reason for the death of your child.” “A respectful investigation is the right thing,” Rognum said.

Judson said that “it can often be extremely difficult, if not impossible, to eliminate all other possible causes of a death or injury” and to differentiate between SUID and

abuse. Investigative errors can turn a SUID case into an abuse case. “It’s important to remember that sometimes factors unrelated to the cause of death get treated as the cause of death.” A failure to thrive, for example, “can be a marker of abuse and neglect, but it can also be a marker of an undiagnosed illness.” Given what we know about cognitive bias, she said, “we should be extremely cautious about treating things as homicide first.” Judson reiterated that it could be helpful to change the language around these deaths from “suspicious” to “undetermined” or “unexplained.”

Stout said that “It is hard and expensive to do this, I won’t say correctly, but in a way that limits the harm. There is harm that comes out of this if we overlook and miss abuse. There’s harm that occurs in this if we assume that there’s been abuse when there wasn’t.” Stout said that there is a need for increased funding for SUID resources across the board—for law enforcement or CPS, for example—because the real expenses arrive if investigators lack the time and money to reach a correct answer. “We need to quit outsourcing those costs onto our law enforcement and Child Protective Services and medical examiners and coroners,” he said. He suggested that efforts at the state and local levels find solutions because that is where change will happen.

Howard said that current mechanisms used to describe the cause of death in cases of SUID are abstract and cause families to think, “It’s not going to happen to me.” She suggested that sleep science alone has not solved the problems posed by SUID. “There’s more to it,” Howard said, “and we need to understand what’s actually causing it.”

Moon said that we need to think about public health messaging and how to reframe the message around SUID and about what messaging can be more effective. She said that the field should be forward thinking. “New messaging and next steps” could be drawn from the day’s workshop, she said. “We’ve had some great brainstorming” and difficult conversations, but we need to do something concrete.

Goldstein saw alignment in the interests of the different disciplines represented at the workshop. “There’s no reason we can’t have powerful collaborations,” he said. “Some will involve learning from models elsewhere; some will be uniquely American.” Goldstein said that, while the science of SUID research had not been touched upon at length, science presents a good foundation for concentrating efforts. All efforts, he added, should be oriented around children and the truth. The “concentration of resources and capabilities and shared interest can be very powerful.”

Bundock was moved by the compassion, commitment, and energy of the day’s speakers. Forensic pathologists “are not just there to determine manner and focus on potential crimes,” she said. “Our mission is really to speak for the decedents and be experts in determining the cause of death. We welcome new advances in science and the way that research and scientists can help build the evidentiary foundation for diagnoses.”

Sharfstein asked attendees to keep their view on the horizon. “Where are we trying to get?” he asked. “What are we doing to get there, and how do we know if we’ve gotten there? Those are the basics of a public health approach.” If there is criminal activity, it should be identified, but reducing the trauma to parents is an incredibly important goal. Sharfstein was struck by the importance of “day one” during a SUID case, both in terms of the investigation and in terms of the mental health of the family. He suggested that, in the future, interdisciplinary groups could develop new, cross-state protocols based on the available workforce. He called out data gaps that relate to the experience of families, suggesting that it is important to identify a framework for measuring progress toward all the fundamental goals.

Segura appreciated the opportunity to speak both as a pediatrician and as a parent. “If I had any take-home point,” she said, “it would be, ‘We want to find out what happened to your child.’” Although her family was treated with compassion, Segura wished that investigators had better expressed their desire to find answers in Rosie’s case. She appreciated that Robert’s Program staff used language like “leaving no stone unturned.” If we take that approach, she said, we can mitigate trauma associated with so many services coming into the home.

As science evolves, parents affected by SUID will benefit from knowing that researchers are actively looking for answers, Segura concluded.

DISCLAIMER This Proceedings of a Workshop—in Brief was prepared by Eric Olson, Steve Olson, and Steven Kendall as a factual summary of what occurred at the workshop. The statements made are those of the rapporteurs or individual workshop participants and do not necessarily represent the views of all workshop participants; the planning committee; or the National Academies of Sciences, Engineering, and Medicine.

PLANNING COMMITTEE Joshua M. Sharfstein (NAM) (Chair), Johns Hopkins Bloomberg School of Public Health; Elizabeth Bundock, State of Vermont; Kelly Burke, International Association of Chiefs of Police; Richard Goldstein, Boston Children’s Hospital and Harvard Medical School; Mary Beth Howard, Johns Hopkins School of Medicine; Katherine H. Judson, Center for Integrity in Forensic Sciences; Rachel Moon, UVA Health Children’s; Torleiv Rognum, University of Oslo; Florencia Segura, Einstein Pediatrics; Jamie Smith, Indiana Department of Health; Peter Stout, Houston Forensic Science Center. The National Academies’ planning committees are solely responsible for organizing the workshop, identifying topics, and choosing speakers. Responsibility for the final content rests entirely with the rapporteurs and the National Academies.

REVIEWERS To ensure that it meets institutional standards for quality and objectivity, this Proceedings of a Workshop—in Brief was reviewed by Fern R. Hauck, University of Virginia School of Medicine; Erin Murphy, NYU School of Law; Jennifer R. Snippen, Lane Community College; and Lucas Zarwell, U.S. Department of Justice. Kirsten Sampson-Snyder, National Academies of Sciences, Engineering, and Medicine, served as the review coordinator.

SPONSORS This activity was supported by a grant between the National Academy of Sciences and the American Academy of Pediatrics (AAP) and from the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) as part of awards totaling $225,000 with 11 percent funded by non-government sources. Any opinions, findings, conclusions, or recommendations expressed in this publication do not necessarily represent the official views of, nor an endorsement by, any organization or agency that provided support for the project.

STAFF Steven Kendall and Maddi Nicol.

SUGGESTED CITATION National Academies of Sciences, Engineering, and Medicine. 2026. Achieving a Just Response to Sudden Unexpected Infant Deaths: Proceedings of a Workshop—in Brief. Washington, DC: National Academies Press. https://doi.org/10.17226/29414.

For additional information regarding the workshop, visit https://www.nationalacademies.org/projects/PGA-POLICY-24-05.

Center for Advancing Science and Technology Copyright 2026 by the National Academy of Sciences. All rights reserved.