Losing a child is heartbreaking and devastating. It is one of the most difficult experiences a parent can face. Please know that our thoughts are with you during this painful time.
When something like this happens suddenly, there are many questions that can come up. Parents want to understand what happened and find answers to those big questions. This is why the Centre is here to help. Parents
We created this website and the documents that go with it for you. You will find information for parents who have suddenly lost a child. Relatives and friends can also read the documents to better understand what parents are going through. We have also tried to answer the questions we are often asked.
You may not be able to read everything right now. That is completely normal. There is a lot of information, and grieving takes a great deal of energy. Take the time you need. Go at your own pace.
You may also wish to read some sections with a trusted person so you can talk and share how you are feeling.
Please do not hesitate to contact us. We are here for you.
With respect,
The team of the Jeremy Rill Centre
A message to Inuit parents and parents of First Nations and Metis
We invite you to visit the pages on our website that address the death of a child. These pages were created to offer support, information, and resources to families who are grieving.
We humbly recognize that this content was developed within a cultural framework that may not reflect your traditions, teachings, or spirituality. Each Nation has its own ways of grieving, honoring children, and supporting families.
If some of the information is helpful to you, we are grateful. If other parts do not fit with your culture, we fully understand and respect that.
We remain open to learning and to improving our approach so it can be more inclusive and respectful of the realities of First Nations.
With respect,
The team of the Jeremy Rill Centre
Welcome to the Jeremy Rill Centre
The Jeremy Rill Centre is a specialized program at the Montreal Children’s Hospital. It provides support to families across Quebec who are experiencing the sudden and unexpected loss of a young baby or child.
In the following pages, we will:
Introduce the Centre.
Review what is known about sudden deaths in young babies or older children.
Present the various professionals involved in determining the cause of death, including coroners and pathologists.
Review the different steps of the investigation, highlighting all the resources used.
The Jeremy Rill Centre supports families who experience the sudden and unexpected loss of a young baby or child. We also provide assistance to doctors and healthcare professionals working with these grieving families.
We collaborate with coroners, pathologists, and other experts to determine the cause of the child’s death and provide families with the best possible support. Our services are available at the Montreal Children’s Hospital.
Losing a child unexpectedly is a tragic and devastating experience that brings immense grief and profound upheaval. These children, seemingly healthy, like little Jeremy, bring joy and pride to their parents, only to be taken away without warning. Parents wish to understand what happened, whether they could have acted differently, and what can be done to prevent such a tragedy from happening again, especially if they plan to have more children.
At the Jeremy Rill Centre, we have a team of specialists in general pediatrics, cardiology, genetics, immunology, pediatric pathology and forensic medicine, as well as neuropathology.
Our goal is to guide families through the sometimes complex investigation into the cause of death. We are here to answer their questions and alleviate their concerns.
It is very important for parents of children who have died suddenly to know that, in Quebec, all cases are referred to Montreal for investigation by pediatric specialists, following an international protocol developed to maximize the chances of identifying the cause of death.
Whether the family lives in a remote area of the province or in Montreal, the investigation is as thorough and extensive as one carried out in the best centres in the United States or Europe.
The Centre works closely with similar institutions around the world and holds an annual meeting with invited speakers. For the past 30 years, we have welcomed internationally recognized doctors and researchers.
Our staff also shares its knowledge and experience at provincial, national, and international conferences.
Currently, three people work at the Jeremy Rill Center in Montreal
Coordinator: Lidia Spagnuolo
Lidia joined the Center in 2021. She is an exceptional organizer who coordinates all the activities of the Center. She shows a lot of compassion while maintaining a high level of professionalism with all our partners, including coroners and pathologists. She is truly a gem for us!
Doctors: Aurore Côté
Dr. Côté has been with the Center since 1987 and has played a key role in the development of all activities. She is both a clinician and a researcher, having published numerous scientific articles on sudden deaths in children. She regularly attends international meetings and has been a guest speaker at local, national, and international conferences. Dr. Côté chairs the multidisciplinary meetings and particularly values the exchanges with all partners. She also contacts the parents referred to the Center to help them navigate through the investigation and results.
Christina Marrata
Dr. Marrata is a new addition to our team and plays a role similar to Dr. Côté’s. She co-chairs the multidisciplinary meetings and contacts the parents. A specialist in intensive care, her expertise is varied and highly appreciated. For several years, she has also been part of the provincial committee reviewing child deaths.
We have doctors at two other centers:
Claude Cyr, Jean-Sébastien Tremblay-Roy et Caroline Proulx
These three doctors work at the University of Sherbrooke’s Hospital Center. They are involved in the emergency room when a child is brought in unresponsive and in the intensive care unit.
They have expertise in palliative care and bereavement follow-up. They meet with parents living in the Eastern township region and provide grief counseling. They participate in multidisciplinary team meetings for children from the Eastern township region. Their expertise and collaboration are greatly appreciated.
Ghassan Choker
Dr Choker is the head of the Department of Pediatrics at the Gatineau Hospital Center and serves as a referral point for patients in the Outaouais region. A specialist in intensive care, he has an interest in palliative care and bereavement support for families. He joined our team in 2026, and his contribution is greatly appreciated.
Standardized autopsy: An autopsy is performed according to international guidelines at two pediatric centers in Montreal. If needed, additional tests are done based on the child’s health information, medical history, and the circumstances of the death
Telephone call: Soon after the death, a doctor from the Center calls the parents to explain the investigation steps, timelines, and to answer any questions they may have. This doctor also ensures that parents receive adequate support during their grieving process.
Meetings are organized according to the parents’ needs (or their distance from the Centre). This can be done in person or via videoconference.
Monthly meeting: Every month, the Jeremy Rill Center organizes a meeting to discuss the findings from the investigations of sudden deaths. Pathologists, coroners, and other experts take part in these meetings. Afterward, the final autopsy report and the coroner’s investigation report are written.
Explanation to parents: Once the investigation is complete, the parents receive the conclusions and results of the autopsy and the investigation. A meeting is offered by the physician of the Center either in presence or by visioconference.
Genetic Consultation: If a genetic condition is suspected or if no cause is found, a genetic consultation is offered.
This consultation includes:
A review of the pregnancy and birth records, as well as the child’s medical history.
A family tree spanning three generations with the family’s medical history.
Genetic tests on the deceased child’s tissue and the parents’ to look for genetic abnormalities that might explain the death.
Recommendations for other children: Advice is given on how to protect other children in the family, if necessary, based on the results of the investigation.
Ongoing support: The coroner and the staff at the Jeremy Rill Center are available to answer questions and address concerns throughout the investigation process. The Center’s staff is also available after the investigation has been completed, even years after.
Coroners are responsible for leading each investigation following a sudden death. As mentioned earlier, the coroner acts as the coordinator of the investigation.
Since the founding of the Jeremy Rill Centre, coroners have consistently offered their collaboration. Their support is greatly appreciated by the Centre’s team and, most importantly, by the families.
Pathologists
Pathologists are physicians who specialize in determining causes of death. They work at the Montreal Children’s Hospital, CHU Sainte-Justine, and the Forensic Science Laboratory.
Pathologists play a critical role in identifying the cause of death. Over the years, through collaboration with colleagues around the world, they have developed a unique and highly valued expertise.
The Quebec Coroner’s Office and permanent coroners
The Quebec Coroner’s Office supports investigations of sudden deaths across the province.
Permanent coroners associated with the Jeremy Rill Centre are key resources in supporting the Centre’s mission. They guide investigations, communicate challenges to the coroners in charge, and help find solutions.
The Lighthouse
The Lighthouse is a pediatric palliative care home that supports grieving families by offering follow-up care to parents and children.
Its expertise is especially valuable, as the Jeremy Rill Centre does not offer its own bereavement services. Families with grieving children are most often referred to The Lighthouse.
Specialist physicians at the Montreal Children’s Hospital and CHU Sainte-Justine
Several medical specialists contribute to investigations of sudden deaths, including cardiologists, immunologists, geneticists, and infectious disease specialists.
Physicians from major centres and regional hospitals
These healthcare professionals serve as local resources when a sudden child death occurs in their region.
The Jeremy Rill Centre was founded in 1986 with the support of Andrée Laganière and Eric Rill, the parents of Jeremy. In 1987, the Ministry of Health and Social Services provided funding to support the Centre, and this funding was renewed within the overall budget of the Montreal Children’s Hospital.
Jeremy, like thousands of children around the world, suddenly passed away in his sleep. The cause of his death could not be identified despite a thorough investigation, including an autopsy. His parents were determined to advance scientific research on the causes of these deaths and ensure that support services were available to grieving families.
From the very beginning, the involvement of coroners and pathologists has been a key part of the Centre’s mission. Initially, services were offered only in the Montreal area, but the Centre quickly opened satellite centres in other important regions of Quebec. It was originally dedicated to sudden deaths of children aged 0 to 1 year old.
Expansion of the Mission
Over the past 40 years, the Centre’s mission has expanded. The Coroner’s Office refers all cases of sudden and apparently unexplained deaths of children up to age 4. In addition, pathologists and coroners refer cases of children up to age 18, as well as sometimes young adults who do not have a doctor to follow up on investigations after autopsy.
All these nurses played important roles at the Centre, even though some of them worked for shorter periods. For example, Ariella Lang was crucial in developing services for parents when the Centre was first created in 1986.
Teresa Gerez joined the Centre in 1991 and developed a complete grief support program. She also contributed to the “Dodo sur le dos” campaign in Quebec and was a board member of the Canadian SIDS Foundation (now Baby’s Breath). She chaired a group of health professionals who organized the “SIDS International” conference in Canada in 2004. Teresa retired after over 15 years of outstanding service.
John Gall was the first coordinator and supported the Centre for five years, playing many roles in setting up services. He also contributed at the national level as a board member of the Canadian SIDS Foundation.
Michèle Halasz worked as a coordinator for 19 years before retiring in 2015. Her precise, professional work, kindness, and empathy were key to the success of the Centre. Michèle also played an active role in organizing the “Dodo sur le dos” campaign and the “SIDS International” conference in Canada in 2004.
Suzanne Marchand worked with us for five years, until her retirement in 2020. She played a key role in transitioning to electronic records for all children referred to the Centre. She also organized telemedicine conferences well before the pandemic and the use of platforms like TEAMS and ZOOM.
Dominique, Rita, and Antonietta worked at the Centre for shorter periods, but each made valuable contributions.
Collaboration with The Lighthouse
Since 2016, the Centre has collaborated with The Lighthouse, a pediatric palliative care home, which offers specialized grief support for families and provides a list of resources available in their community. The Lighthouse also organizes gatherings for bereaved parents.
We sang nursery rhymes: “Ring-around-the-Rosy… London Bridge is falling down… Frère Jacques”… And then, we waited for the rabbit that comes and visits sometimes, but he didn’t show up. He’s shy and, for sure, our noisy celebration kept him away.
A stone engraved to your name as if to make sure that we wouldn’t forget you, as if we ever could, as if we needed anything to bring you back to our memory, as if we’d ever been apart. Millions of smells, sensations, echoes of your laughter and tears forever alive in my heart, my ears, my nostrils, sticking to my skin. And so many images of you, the center of my life, brutally taken away from me. I could almost have held it against you for depriving me of your sweet smile, of the weight of your head on my shoulder, of the pudgy star of your hand pressed against my cheek, knotted in my hair.
For months afterwards, I would hear you calling for me in the night, and I would run and collide against your bedroom door, closed upon your treasures: Brahms lullaby spelled out in tiny notes among a silent circle of stuffed animals. What else was left to me? In a trunk, fluffy little pajamas in tender green and white stripes, still permeated with warm smells of milk, talcum powder and an undefinable undernote of something like freshly cut hay; a duckling at the end of a rubber band and two story books whose heroes’ names were the same as yours.
Lost forever that delightful drowsiness preceding sleep in which I would abandon myself to the pure pleasure of thinking about you, asleep already in your room. Lost the rapturous anticipation of reliving my childhood along with yours. Now, in my insomnia, nothing but desolation for that childhood stolen away from you.
Your brothers ate the cookies and drank the lemonade we’d brought along. And after telling them stories, I sang your lullaby, the one thing I never shared with them. Then we left. Your brothers, in their blond innocence, running away, laughing and tripping one another. They didn’t even know of your existence yet. We had just celebrated your sixth anniversary.
Andrée Laganière
Mother of Jeremy Rill
Sudden death in babies and children
There is still much that is unknown about sudden infant deaths. In the following sections, we will review what is known about these deaths and their possible causes. All too often, however, we reach the end of the investigation without answers. We understand how difficult this uncertainty can be for parents and relatives. We remain available to answer your questions, support you, and guide you; please do not hesitate to contact us.
When a baby or an older child who appeared to be healthy dies suddenly, this is called a sudden and unexpected death. This term is also used when a child had only mild symptoms, such as a slight cold or a low fever, and did not appear seriously ill. In some cases, parents had consulted a doctor before the death, and nothing concerning was found.
The term can also apply when a child had a known medical condition, was doing well, and the death does not seem related to that condition.
In all cases of sudden and unexpected death, a thorough investigation is required to try to understand what happened. Only after the investigation is a final diagnosis made: sudden death with identified cause or unexplained death (no cause identified).
In the province of Québec, all sudden deaths of babies and young children are investigated in Montréal (tests and autopsy). Specialized professionals, mainly doctors called pathologists, follow an internationally recognized protocol. This process helps ensure that every possible test is done to try to find the cause of death.
Sudden death with an identified cause
When a cause is found, the most common reasons are: infections (the most frequent cause), birth defects, most often involving the heart.
Less common causes include: inherited or genetic diseases, disorders affecting the brain, lungs, or kidneys.
See the next section (causes of death) for more information.
Sudden death with no identified cause
When no cause is found despite a complete investigation, deaths are grouped by the child’s age:
In infants under 1 year of age, when no cause is identified, this is called Sudden Infant Death Syndrome (SIDS), also known as crib death. This term means that the exact cause of death is unknown. We know there is a cause, but current medical knowledge and testing cannot identify it.
In older children, this is referred to as Sudden Unexplained Death in Childhood (SUDC).
Causes of sudden death
There are several causes that can explain the sudden deaths of babies and children. It is important to note that all autopsies are conducted by pediatric experts (pediatric pathologists) who follow international guidelines and perform all recommended tests to determine the cause of death.
For babies aged 0 to 1 year, a cause of death is identified in less than one-third of cases. However, if the child is under one month old or over nine months old, there is a greater chance of finding a cause. For children aged 1 to 4 years and 4 to 18 years, it is easier to identify the cause of death than for babies.
Infections are the leading cause of sudden death in babies and children. Sometimes, a child seems healthy and shows no signs of illness, so the parents don’t consult a doctor. Other times, even after a visit to the doctor, nothing serious is detected. Some microbes can cause very severe infections very quickly, leaving little time for parents to act. Sometimes, the child’s immune system does not function properly, preventing the body from defending itself against infections. The most common severe infections are:
Extensive pneumonia (affecting multiple regions of the lungs),
Sepsis (infection spreading through the blood, causing reactions in multiple organs),
Meningitis (infection of the membranes surrounding the brain).
We refer the parents of children who died from a severe infection to immunology specialists to check the funct
Hidden heart disease (disease that do not give symptoms) is the second leading cause of sudden death in babies and children. There are several types of heart disease, including:
Heart malformations,
Cardiomyopathy (heart muscle disease),
Abnormalities in the heart’s blood vessels (including the coronary arteries, which supply blood to the heart),
Heart muscle infections (myocarditis),
Arrhythmias (irregular and abnormal heartbeats).
Many of these heart conditions have a genetic basis, which is why we refer families of deceased children to Cardiology.
These diseases are rare but important to identify to prevent further deaths within the family. A young baby or child may seem healthy until they catch a cold or another mild infection, leading to fever and reduced appetite. It is then that they can become severely ill due to a “metabolic crisis,” often related to a lack of sugar or the accumulation of toxins they cannot eliminate.
Metabolic diseases often leave traces in the liver and muscles, which can be detected during the autopsy. We refer the families of deceased children to genetics services for further investigation.
Although less common, these diseases are important, especially if there are other children in the family.
Neurological and neuromuscular diseases are detected during the autopsy by carefully examining the brain and muscles. The examination of the brain is entrusted to a brain specialist, a neuropathologist.
Another neurological disorder, epilepsy, is not always diagnosed at autopsy; in fact, even in cases known prior to death, this disorder often leaves no visible traces in the brain. However, in recent years, some parents have installed video cameras in their children’s rooms, and recordings have shown that a seizure preceded and led to the death.
In some cases, epilepsy may be genetic, requiring genetic tests to prevent further deaths. It has also recently been found that, particularly in children aged 1 to 4 years, a family history of seizures is a risk factor for sudden death.
Sometimes, even after many medical tests and the autopsy, doctors cannot find a clear reason why a child died. We know this can be very hard and frustrating. Not having clear answers can bring many emotions and questions. When this happens, we explain to the family that there is a cause, but with today’s medical knowledge, we are not yet able to understand or identify it. Doctors use different medical terms depending on the child’s age.
For babies under 1 year old, it is called Sudden Unexplained Infant Death also called (SIDS).
For children and young people between 1 and 18 years old, it is called Sudden Unexplained Death in Childhood (SUDC).
Sudden death in infants (0–1 year)
In infants aged 0 to 1 year, sudden and apparently unexplained deaths are much more common than at any other age between birth and 18 years. This age group also has the highest number of investigations in which no clear cause is found: about 70% to80% of cases remain totally unexplained. A thorough investigation is always done to try to find the cause of death. This investigation includes:
a review of the circumstances and place of death,
a complete autopsy,
other medical tests (radiographs, blood tests),
a review of the child’s and family’s medical history.
Sudden Infant Death Syndrome (SIDS)
Under what circumstances do these sudden deaths occur?
An infant can die suddenly at any time of day or night. However, most deaths occur during sleep. These deaths may happen:
at home or at daycare
in a car
at a friend’s or relative’s home
in a hotel while traveling
Some infants may have had mild symptoms beforehand, such as:
a slight fever
decreased appetite,
a mild cold.
These symptoms did not appear alarming to parents. Minor infections (frequent in young babies) are often found during medical examinations, but they are not sufficient to explain the death. In some cases, parents had consulted a doctor or a nurse the day before or the same day, and no serious concerns were identified.
What does research tell us about the cause?
Sudden Infant Death Syndrome appears to result from a combination of factors.
Despite more than 50 years of intensive research, the exact cause remains unknown.
Many theories heories have been proposed over time. Some are supported by scientific evidence, while others are more widely known by the public. It is important to remember that theories are not causes, but attempts to explain SIDS Studies have shown small differences at autopsy between infants who died suddenly and those who died from known illnesses or accidents. Occasionally, abnormalities are found in the:
brain
heart
lungs
or blood
The brain—especially the area that controls breathing, heart function, and sleep—has been studied extensively. However, it is still unclear whether the abnormalities found cause death or indicate an unidentified condition that may have begun before birth.
It is essential to note that these abnormalities found at autopsy cannot currently be detected in living infants.
What are the most recent theories?
Most scientists believe that SIDS is not caused by a single factor.
It likely results from a combination of environmental factors (before and after birth) and factors related to the infant.
The most widely accepted explanation today suggests that an infant encounters a stressful situation that should normally activate the brain’s internal “alarm system.”
This system protects the baby by triggering awakening, movement, or crying.
For example, the airway may be temporarily blocked, either internally or by an object in the crib.
Most infants respond and free themselves.
Infants who die do not appear to activate this protective response.
Why do some infants do not respond?
Some researchers believe that events during pregnancy may affect how well this “alarm system” works.
Even mild infections, such as a cold, may play a role that is not yet fully understood. Evidence suggests that infections can trigger a chain of events that, when combined with other factors (such as airway blockage or difficulty waking), may be harmful to only certain infants.
Some infants may also have genetic variations that make them more sensitive to environmental challenges.
This could explain why many other infants exposed to the same situations do not die.
Current research and genetic testing
Intensive research is ongoing worldwide to study:
genes related to infection response
genes affecting the brain’s alarm system
mechanisms involved in arousal and waking
Researchers also study the normal development of healthy infants to better understand how infants who die differ from those who do not. When no cause is identified, families are referred to medical genetics. Genetic testing may examine hundreds of genes, including those related to:
development
epilepsy
heart conditions
immune responses
Research continues to advance rapidly. We hope that future discoveries will help identify the causes of these deaths and, most importantly, prevent them. If no explanation is found, genetic specialists offer parents the option to return for another consultation in about 2 to 5 years, when more advanced testing may be available.
A theory no longer accepted
In the 1970s and 1980s, the apnea theory—the idea that babies forget to breathe—was widely accepted. It was believed that infants who died had repeated and prolonged breathing pauses.
Today, we know that:
breathing pauses can be normal in infants
they are not dangerous
breathing is automatic and not related to memory
Infants do not forget to breathe. This theory is no longer supported by scientists. Some infants may have abnormal apnea in the first weeks of life, but these infants receive medical care and do not die. After one month of age, such long respiratory pauses are very rare, except in the presence of a specific illness that gives parents several warning signs. Those can be a slow development, persistent feeding issues, lack of adequate weight gain.
Sudden deaths in older children (1-18 years)
Sudden and unexpected death in an older child is a sudden death that affects children from 1 to 18 years of age. Sometimes, even after very thorough medical tests, no cause is found. This is called Sudden Unexplained Death in Childhood (SUDC).
As with sudden infant death (in babies under 1 year of age), an investigation is done. This investigation includes a review of the circumstances and place of death, a complete autopsy and other medical tests as well as a review of the child’s and family’s medical history.
There has been less research on sudden deaths in older children than in infants. These deaths are therefore still not well understood, even though scientific interest has increased over the past 20 years. At this time, there is no known way to prevent or reduce the risk of these deaths in children aged 1 to 18 years.
Common characteristics seen in children who died (1 to 18 years) or in their families
Scientific studies have found that, in many cases:
Children are most often 1 to 4 years old
There are more boys than girls
Death happens during sleep
In about 50% to 75% of cases (in some scientific studies), the child is found lying on their stomach, even if they were not usually placed in that position
About half of the children had a mild illness or fever at the time of death, but this does not explain the death
The child’s physical and intellectual development was normal
Seizures and sudden deaths
Some studies show a link between febrile seizures (seizures caused by fever) in the child or in his family and sudden deaths in children 1 to 4 years old. Today, many parents use video monitors to watch their child during sleep. In some rare cases, a child’s death was recorded. In some of these recordings:
a seizure happened just before death,
the child did not wake up,
the child did not cry or call for help.
We now have genetic testing to identify inherited conditions that can cause seizures.
Genetic research
In addition to research on genetic diseases related to seizures, the control of regular heartbeats and other cardiac functions is also being studied intensively. Several genes are abnormal in a small proportion of children who have died suddenly. This research now leads us to refer families to Genetics if no cause of death has been identified. Genetic testing covers hundreds of genes and includes, among others, genes associated with epilepsy and heart disease. Some genetic changes have been found in a small number of children who died suddenly.
What about prevention?
At this time, what we know does not allow us to prevent these deaths. However, research is continuing and genetic testing is becoming more advanced. We hope that in the coming years, research will help us determine the cause of these deaths and, above all, prevent them.
Finally, if no explanation is found, genetics specialists often offer parents the option to return for another consultation in 2 to 5 years. By then, new and more advanced tests may be available because of scientific progress.
Acknowlegments
Our sincere thanks to the following individuals for their assistance with the texts on this website:
Géhane Kamel, Deputy Chief Coroner, Office of the Coroner
Jessie Houle, Operations Officer, Investigation Service, Sûreté du Québec
Mélanie Provencher, Detective Lieutenant, Montreal Police Service
Laura Whelton, Genetic Counselor, Montreal Children’s Hospital
We are also deeply grateful to the parents and other reviewers who provided thoughtful feedback to help make the texts more understandable.
