The Jeremy Rill Centre – Resources for professionals

While many coroners are already familiar with the Jeremy Rill Centre, this section is specifically addressed to health professionals and to new coroners and those who have not yet had the opportunity to collaborate with us.

The Jeremy Rill Centre is a provincial center dedicated to supporting families who experience the sudden and apparently unexplained loss of an infant or child. Since 1986, we have worked closely with coroners and the Coroner’s Office in Quebec.

Since 1991, an agreement with the Coroner’s Office has allowed us to be informed of all child deaths (currently those aged 0 to 4 years). Every week, a member of the Coroner’s Office staff sends us a list of deaths that meet our criteria. It is important to note that we do not get involved in cases of stillbirth or accidents. However, we do intervene in certain cases of children with known illnesses who die suddenly and apparently without explanation.

After reviewing the list received from the Coroner’s Office, along with the “Ordonnance d’examen externe, d’autopsie ou d’expertise ” form, we identify the cases that fall under our mandate. Before contacting the family, we always ensure to reach out to the coroner in charge of the investigation. Generally, we do not get involved when non-accidental trauma is strongly suspected or evident.

When we contact the parents, we are committed to:

• Briefly reviewing the child’s medical history and the circumstances of the death.
• Answering the parent’s questions.
• Explaining in detail the ongoing investigation and the expected timelines for results.
• Ensuring they have support for their grief and offering our services if needed.
• Sending a follow-up email summarizing our discussion to the parents, with a copy sent to their coroner for information.

Parents can contact us at any time via email or phone. We also follow up three months and one year after the child’s death to remind them that we are here for them.

We hold a monthly multidisciplinary meeting between coroners and pathologists. This team includes:

• Doctors from the Jeremy Rill Centre
• Pediatric pathologists from the Montreal Children’s Hospital and CHU Sainte-Justine
• Neuropathologists from the Montreal Children’s Hospital and CHU Sainte-Justine
• Pathologists from the Forensic Science Laboratory and the Institute of Legal Medicine
• Coroners in charge of the cases discussed
• Two permanent coroners who attend nearly all meetings
• A chemist and toxicologist
• Specialists such as geneticists, cardiologists, infectious disease specialists, immunologists, and others, invited as needed

During these meetings, we:

• Present the circumstances of the death by the Centre’s physician and the coroner.
• Review the child’s medical history and relevant family background, based on information provided by the police questionnaire and our phone conversation with the parents.
• Explain the detailed autopsy results provided by the pathologist.
• Discuss the findings of the autopsy and other relevant information.
• Determine the cause of death or the absence of a cause, if applicable.
• Decide on any further investigations, if necessary.

Risk factors vs. cause of death

It is important not to confuse the risk factors for a death with the cause of death.

A risk factor is defined as “a social or economic situation, a biological state, a behavior, or an environment that is associated, possibly through a cause-and-effect relationship, with an increased vulnerability to disease or health problems” (World Health Organization).

The risk factor does not cause the death, but it increases the likelihood of it occurring.

The cause of death, on the other hand, is what has directly and unquestionably caused the death. In young children, the most common causes of death are: severe infection, undiagnosed heart disease, or a metabolic or genetic disorder.

Many risk factors are reversible, meaning they can be eliminated or reduced by avoiding exposure.

Researchers study in details cases of sudden death in an attempt to find what can increase the risk of death. In these scientific studies, the most important reversible risk factors identified for sudden unexplained deaths in the first year of life include:

• Maternal smoking during pregnancy
• Sleeping with an adult on a sofa or cushioned chair
• Sharing a bed with a parent (or another person) whose ability to wake up in case of danger is impaired by alcohol, medication, drugs, or extreme fatigue
• Sleeping on the stomach
• Absence of breastfeeding
• Sleeping alone in a separate room from the parents

For instance, when a young baby who has passed away was sleeping on his/her stomach, it is incorrect to say that sleeping on the stomach caused the baby’s death. It is a risk factor, not a cause. The baby was likely vulnerable and should not have slept on his/her stomach.

The concept of vulnerability is crucial. Thousands of babies have slept on their stomachs and did not die; those babies were not as vulnerable as the one who passed away.

Unfortunately, we currently do not have a test to identify vulnerable babies. This is why it is important to eliminate as many risk factors as possible for all babies.

Smoking

It is a essential to remember that maternal smoking during pregnancy is the most important risk factor for a sudden death during the first year of life. It has also been shown that even if the mother cannot stop smoking during pregnancy, any significant reduction in the number of cigarettes smoked is beneficial.

Maternal smoking during pregnancy is a much more important risk factor than smoking by one or both parents after birth.

Sleep position

A major breakthrough occurred in the early 1990s when sleeping on the stomach was identified as a significant risk factor for sudden infant death. Prevention campaigns to discourage this sleeping position in countries where it was prevalent led to a significant drop in the number of deaths (a reduction of more than 50%).

However, because sleeping on the stomach is only a risk factor and not a direct cause, many deaths still occur, highlighting the importance of reducing all modifiable risk factors.

Unsafe cosleeping

Another important risk factor (although less common) is cosleeping with a parent on a cushioned piece of furniture (sofa, chair). There is not enough safe space for the young baby, and the baby may become trapped between the sides of the furniture and the parent. Every year, deaths occur in such circumstances, mostly in very young babies (aged less than 8 weeks).

Another risk factor is co-sleeping with someone who has consumed alcohol, drugs, or any substance that impairs their ability to wake up quickly in case of danger to the child.

Co-sleeping itself with mom or dad doesn’t really pose a problem if:

• mom didn’t smoke during the pregnancy
• the person sleeping with the baby doesn’t take any substances that reduce their alertness
• the co-sleeping arrangement isn’t on a sofa or similar surface.

We refer you to the following section on the ‘Hierarchy of risk factors’ to further understand the role of risk factors

Hierarchy of risk factors for sudden death

As discussed in the previous section, risk factors are conditions specific to the individual or environmental circumstances that have been shown in scientific studies to significantly increase the risk of death. However, these factors are generally not sufficient, on their own, to be considered a direct cause of death.

Intrinsic and extrinsic risk factors

• Intrinsic risk factors are internal to the individual and include age, genetics, medical conditions, and behaviors.
• Extrinsic risk factors are external and related to the environment or contextual circumstances (e.g., pollution, environmental design, passive smoking).

Some risk factors substantially increase the risk of death, whereas others are associated with a more modest increase.

When multiple risk factors are present simultaneously, their interaction increases the likelihood of an adverse event. Importantly, not all risk factors carry the same weight.

In Québec, for example, the mortality rate associated with sudden unexplained death in infants under one year of age is approximately 2 deaths per 10,000 live births.

• If a risk factor doubles the mortality rate (×2), the rate in the exposed population increases to 4 deaths per 10,000 live births.
• If a risk factor increases the mortality rate by a factor of 15, the rate rises to 30 deaths per 10,000 live births.

Conversely, among infants with no identified risk factors, the estimated mortality rate is less than 1 per 100,000 live births. These data clearly highlight that eliminating risk factors, when possible, is a key preventive strategy.

Explanation of risk

In scientific studies, the association between risk factors and health outcomes is commonly expressed using the odds ratio.

The odds ratio measures the association between an exposure (risk factor) and an outcome (disease, adverse event, or death). It compares the likelihood of the event occurring in exposed individuals with that in non-exposed individuals.

• An odds ratio greater than 1 indicates increased risk. The higher the odds ratio, the higher the risk
• An odds ratio less than 1 suggests a protective effect.
• An odds ratio equal to 1 indicates no association.

The following tables present the main known risk factors for sudden death in infants under one year of age. They are categorized as intrinsic or extrinsic and ranked by relative importance.

Intrinsic risk factors

Intrinsic factors		Odds ratio
Maternal smoking during pregnancy      – < 20 cigarettes/day      – > 20 cigarettes/day	4 9-18
Drug use during pregnancy	3–10
Preterm birth (< 36 weeks’ gestation)	3–11
Low birth weight for gestational age	2–4
Absence of breastfeeding	2–3

Extrinsic risk factors

Extrinsic factors	Odds ratio
Bed-sharing in an unsafe environment (sofa, armchair, or other upholstered furniture) with probable suffocation risk	18–50
Bed-sharing with a person whose level of consciousness is impaired by alcohol, medications, or drugs	18–25
Bed-sharing with an infant under 2 months of age (corrected for prematurity), depending on maternal smoking      – Maternal smoking during pregnancy      – No maternal smoking during pregnancy	17 1-2
Infant found with head completely covered by excessive bedding	12–15
Sleeping outside the parents’ bedroom (infants under 5–6 months of age)	6–20
Significant environmental tobacco smoke exposure after birth      – With bed-sharing      – Without bed-sharing	4-17 1-3
Elevated ambient temperature combined with excessive covering (higher risk in prone position)	4–11
Objects in the sleep environment posing a risk of accidental suffocation (pillows or similar items)	4–7
Prone sleeping position in infants unable to roll onto their back (under 4–5 months of age)      – Elevated temperature and/or swaddling      – Normal temperature without swaddling	10 2

Conclusion

For healthcare professionals, it is essential to be familiar with the risk factors associated with sudden infant death and to understand their relative contribution. Preventive efforts should focus primarily on the most significant risk factors, particularly maternal smoking during pregnancy, bed-sharing on upholstered furniture, and substance use that impairs consciousness in individuals who practice bed-sharing.

References

CESDI study (United Kingdom); Chicago Infant Mortality Study (United States); ECAS study (20 europeen countries) German Case-Control Study (Germany) ; Ireland study; SWISS Study (low income families, United Kingdom); New Zealand Cot Death Study.

---

Electronic monitors for babies

Electronic monitors are available that track various aspects of an infant’s health, such as breathing, heart rate, movement, and blood oxygen levels.

It is important to note that there is a difference between monitors available commercially for parents and medical monitors. Indeed, only a doctor or nurse practitioner can prescribe a medical monitor after a thorough evaluation of the infant’s health.

Do medical monitors prevent sudden infant death?

There is no scientific evidence to suggest that electronic monitors for babies help in preventing sudden infant death syndrome (SIDS).

Twenty years of use of these monitor from the 1980s to the end of the 1990s had not reduce mortality from sudden infant death at all.

By contrast, only 1-2 years of the campaign to reduce the risk of sudden death, (mostly avoiding the stomach sleeping position) brought a 50% decrease in these deaths.

A few important considerations about commercial monitors include:

• Potential disruptions: The use of these monitors can be disruptive for families. False alarms can be frequent and cause serious concern to parents.
• False sense of security: Parents may not pay all the attention to the baby’s sign of illness. Or the risk factors might not being avoided by relying on the monitor

Information for physicians and nurses in the Emergency Department

For many years, we have observed, unsurprisingly, that the first contact with emergency room physicians and nurses plays a crucial role for parents facing the sudden and unexpected death of their child.

The nurse is usually the key point of contact throughout the different stages, from the arrival of the child in critical or unresponsive condition to the parents’ departure after the announcement of the death and the final goodbye to their child.

The physician, on the other hand, is responsible for coordinating the resuscitation efforts and, when applicable, announcing the death. They address the parents’ initial questions and inform them of the next steps to follow.

Physicians and nurses thus form essential support systems to which parents cling during this ordeal. It is therefore crucial that these professionals are adequately informed:

• of the relevant data regarding investigations required in the emergency room to maximize the chances of identifying the cause of death;
• of the investigations to be conducted by the coroner and the pathologist;
• of the possible causes of death that may be identified.

This reference document, prepared several years ago for the emergency room staff, remains relevant and constitutes a valuable source of information. Le décès subit et innatendu d’un jeune enfant

Investigation in the Emergency Department

When a child presents to the emergency room apparently deceased or moribund, whether resuscitation efforts are successful or not, an investigation into the possible causes of the event must always be undertaken. This approach applies to both infants and older children.

The initial investigation should be approached as if the child was presenting with a serious illness: complete blood count, electrolytes, blood cultures, respiratory virus tests (if applicable to the season), chest X-ray, and if necessary, lumbar puncture (often done after death is pronounced). Any other investigations deemed relevant may be added depending on the clinical context and the information provided by the parents.

Ideally, these samples should be taken as soon as blood access is established, especially during resuscitation.

WARNING: Cultures must be taken following the same protocols as for a living child, with strict adherence to contamination prevention measures.

The autopsy is performed either at the Montreal Children’s Hospital or at CHU Sainte-Justine, according to a protocol established several years ago (see the section on the coroner’s role). Before the autopsy, the pathologist will request a skeletal survey (or a complete CT scan) as well as a blood sample for toxicological screening. These tests should therefore not be performed in the emergency room on a deceased child.

Although cultures are also performed during the autopsy, it usually does not take place on the same day as the death and may be delayed by 2 to 4 days. This delay can allow for the growth of bacteria unrelated to the actual cause of death. The results of investigations conducted in the emergency room can therefore play a critical role in identifying the cause of death. It is important to arrange follow-up to transmit these results to the coroner.

It is important to note that, in infants, nearly 80% of deaths remain unexplained after investigation. When a cause is identified, infections are usually at the top of the list, and it is often the samples taken in the emergency room that reveal the causative agent.

Steps following the death of a child

Beyond the announcement of death, the physician must answer the parents’ questions, which are often numerous and sometimes without immediate answers. Parents also wish to understand the steps to come.

A good understanding of the investigation process allows the physician to answer parents’ questions.

The investigation of the cause of death is a lengthy and complex process. The following point by point steps may guide the explanations provided to the parents.

1. The physician communicates with the coroner when the cause of death cannot be established with certainty.
2. The coroner requests an autopsy and obtains relevant records: the hospital birth record, the primary care physician’s medical records, hospitalization summaries, and any other pertinent information regarding the child’s history. The coroner also has access to the Dossier santé Québec.
3. The police investigate the circumstances of the death. They visit the location where the child was found deceased and may seize certain items related to the child’s care (blankets, bedding, clothing, bottle) for analysis. They interview the parents on the same day or in the following days, as well as other individuals close to the child (neighbors, babysitter, if applicable).
4. The pathologist performs the autopsy, including an external examination, radiological exams, blood samples for cultures and toxicology, and tissue samples for histological analysis. These tissue samples can be explained to the parents as comparable to biopsies. After the external and internal examination, the pathologist provides preliminary impressions to the coroner. The histological analysis is a lengthy process; the overall timeline can extend to 5 to 6 months.
5. The coroner receives the preliminary autopsy report as well as the findings from the police investigation and reviews all the documents collected.
6. When the autopsy results are available (including histological analysis), a multidisciplinary meeting is organized by the Jeremy Rill Center, during which coroners and pathologists discuss the entire investigation and determine the cause of death or conclude that no cause has been identified.
7. A physician from the Jeremy Rill Center, with the coroner’s authorization, communicates with the parents to share the results of the investigation.
8. The pathologist writes the final autopsy report and sends it to the coroner.
9. The coroner writes his/her final report when they believe they have all the necessary information to establish the probable cause of death.
10. The final report is sent to the Coroner’s Office in Quebec, where it is archived. Parents may request a copy from the coroner or obtain it online through the Coroner’s Office website.

Legal obligations following the sudden death of a child

In Quebec, when the cause of death cannot be determined with certainty, the physician has a legal obligation to notify the coroner (Law on the Investigation of Causes and Circumstances of Deaths, L.R.Q., chapter R-0.2).

Reporting to the coroner does not automatically imply that the death is considered suspicious. The vast majority of sudden deaths in children are not attributable to abuse or non-accidental trauma. According to the literature, these causes account for about 2% of sudden deaths.

The coroner and his role

The role of the coroner is to independently and impartially investigate the causes and circumstances of deaths. The investigation is thus coordinated by the coroner.

In Quebec, the police are involved in the investigation, which is not the case in many other parts of the world. This situation can be particularly traumatic for the parents. Fortunately, the police officers conducting these investigations receive specialized training for this purpose (see the section on police officers).

The coroner requests that an autopsy be performed without the parents’ permission, as this procedure is mandatory. In exceptional cases, the coroner may not request an autopsy (e.g., in the Far North or due to religious beliefs), but this is very rare. A pathologist will thus be involved, who will conduct the autopsy and search for a medical cause of death.

Since the mid-1990s, the Jeremy Rill Center has recommended to the Coroner’s Office in Quebec that pediatric autopsies should take place in a pediatric setting to maximize the chances of finding the cause of death. This principle is still respected, and autopsies are alternated (by month) between the two pediatric hospitals in Montreal.
The coroner will contact the pathologist.

Based on the results of investigations by various professionals, the coroner will prepare a report and send it to the Coroner’s Office in Quebec. Most coroners will contact the parents to inform them of their conclusion regarding the cause of their child’s death. Some do this as soon as they receive the preliminary autopsy report, as they may already know if an obvious cause has been found during the macroscopic examination or through the results of various cultures.

NOTE: The Jeremy Rill Center is informed of every child death (ages 0 to 4) by the Coroner’s Office in order to intervene with the parents.

The Center is also informed of the name of the physician who referred the case to the coroner; we will then contact this physician to provide the results of the investigation (with the coroner’s permission).

Announcing the death and what follows

It is important to remember that the deceased child must be treated with gentleness and dignity, “as if he was still alive.”

The nurse often plays a crucial role in the announcement of the death. The family must feel supported during this crisis, which causes a violent shock, disbelief, and overwhelming guilt.

• Allow parents to express themselves.
• Listen before attempting to reassure.
• Try to break the myth of the “perfect parent” who can control everything.
• Sometimes, being present and available can be more effective than any words.

The physician has the himportant task of announcing the death.

• It is always appropriate to express your condolences for the death of the child who could not be revived. Most physicians do this, and parents appreciate it.
• You will then need to attempt to answer the parents’ questions. Parents in shock struggle to process the information given to them. Be clear but brief in your explanations.
• Since you do not know the cause of death, a brief summary of possible causes (see section below on this topic) and an explanation of the efforts that will be made to determine the cause will be greatly appreciated. Parents need to know that things do not end in the emergency room.
• You will need to explain that you will contact the coroner and that the police will be involved. Help the parents understand why this is necessary; they are already feeling guilty about the death of their child.

Finally, while many resources exist for grieving, it is always very difficult for parents to take the steps themselves for grief follow-up. They do not have the strength in the days, or even weeks, following the tragedy.

If staff from your hospital were involved in the emergency room—such as a specialized grief nurse, social worker, or psychologist—please ensure that follow-up has been initiated or will be organized.

There are no contraindications for grief follow-up, even if the case is a coroner’s case.

In summary:

• Explain to the parents the efforts that will be made to determine the cause of death
• Help parents understand the role of the coroner and the police
• Refer the family for bereavement support

Causes of sudden and unexpected death in children

There are many causes identified in sudden and unexpected child deaths. Identifying a cause may depend on timely tests, especially if it is a rapidly progressing infection.

At the Jeremy Rill Center, we have data from all over Quebec based on over 1,000 cases of sudden and apparently unexplained deaths that occurred over the past 40 years in children under one year of age. A cause was found in 20% of these deaths.

In the second year of life, the proportion of causes found is higher (approaching 50%), but the causes are the same. When no cause is found, we refer to it as Sudden Infant Death Syndrome (SIDS) or Sudden and Unexplained Death in Children.

The main causes identified after investigation, in order of frequency, are:

• Infections (major bacterial pneumonia, sepsis, meningitis)
• Cardiac malformation and cardiac disease (undiagnosed congenital heart disease, cardiomyopathy, myocarditis)
• Metabolic or genetic disorders
• Neurological or muscular disorders
• Accidental asphyxia
• Abuse and non-accidental trauma

---