Caring for parents after the sudden death of a child

Richard Goldstein, MD

Erin Bowen, MD

Sudden unexplained death in infants and children is responsible for more deaths than pediatric cancer or heart disease and is the leading cause of postneonatal mortality in most advanced economies throughout the world. There are important questions about increased risks in other children in the family, while bereaved parents often experience severe and prolonged grief that may influence their parenting.

At the American Academy of Pediatrics (AAP) 2019 National Conference and Exhibition in New Orleans. Louisiana, in October, Richard Goldstein, MD, explained the complex needs of families whose children died from sudden infant death syndrome (SIDS) or sudden unexplained death in childhood (SUDC) and discussed the growing body of knowledge from biomedical and grief research as a basis for helping pediatricians provide improved care.

His session titled “Supporting families after the sudden unexpected death of a child” took place on Monday, October 28.

“Pediatricians are very attuned to the importance of giving sleep recommendations for preventing SIDS and are aware of the possible child abuse implications surrounding cases of sudden unexplained death. However, our field has not done as good of a job educating clinicians about how to interact with and help families who are in crisis after experiencing the unimaginable,” said Goldstein, program director, Robert’s Program on Sudden Unexpected Death in Pediatrics, and assistant professor of Pediatrics, Harvard Medical School, Boston, Massachusetts.

“These are our patients and their families. Sometimes they die following all our advice and, even when they don’t, many of us can feel unprepared about what to say or do,” said Goldstein. “Our educations typically leave us uninformed about strides made by research in this area. It is important that clinicians be prepared to understand and address the concerns of these families beyond just talking about risk factors in the sleep environment.”

Parents almost universally want to know why it happened, how their seemingly healthy child might have died this way, and what it means for their other children. Goldstein heads a program that investigates the possibility of undiagnosed diseases and vulnerabilities in cases of unexplained deaths. He shared research that provides some answers.

Brainstem vulnerability is a driving factor in many cases of SIDS, preventing infants from responding to what is otherwise a modest threat in their sleep environment and leading to a failure to autoresuscitate and arouse. “We have found reduced serotonin in the brainstems of SIDS infants and shown in animal models that this deficiency causes autoresuscitation failure,” said Goldstein.

His group’s SUDC research has found changes in the

hippocampus that are otherwise considered hallmarks of epilepsy. Related to this discovery, they have discovered a gene present in some SIDS cases linked to Dravet syndrome, a severe epilepsy syndrome.

“Whereas this research is significant and may provide direction for the future, to be a good pediatrician for these families requires an understanding of the psychological crisis they are going through,” said Goldstein, who also discussed his grief research that shows extremely high levels of grief-related symptoms that impede a mother’s function.

“We found that while approximately 10% of older adults experience pathologic grief 1 year after losing their life partner, 60% of mothers who lost a child to SIDS are suffering pathologic grief 1 year later, a burden that continues at high rates for years,” Goldstein points out.

His research has also found ways to identify mothers at higher risk.

Goldstein’s main message was to emphasize the need to remain a family’s pediatrician at an extremely difficult time. He provided practical help for how to reach out to families, help them pursue explanations, and provide needed support.

COMMENTARY

The death of a child is an unnatural event, defying life’s natural order. When the death is sudden and unexpected, there can be added trauma for parents, siblings, and extended family members as the entire family dynamic has changed.

At the AAP 2019 National Conference and Exhibition, Richard Goldstein, MD, addressed this important topic in a session titled “Supporting families after the sudden unexpected death of a child.” As Dr. Goldstein highlights, the pediatrician has a unique role to play in meeting the complex medical and psychosocial needs of the family. However, our training has not adequately prepared us for how to support families after these deaths.

When a child dies suddenly and unexpectedly, the family is faced with a multitude of professionals and agencies, including first responders, law enforcement, emergency department providers, child protective services, and medical examiners. The pediatrician can act as a liaison between these professionals and the family. In providing support for families, it is important for pediatricians to recognize that grief is not linear and that the families’ needs may change over time.

When the child is aged older than 1 year, there is the added challenge that there is limited awareness of the category of death of sudden unexplained death in childhood (SUDC), which is the sudden and unexpected death of a child aged between 1 and 18 years that remains unexplained after a thorough investigation including autopsy. It affects approximately 400 children annually and is the fifth-leading category of death in children aged 1 to 4 years. However, most of the research in sudden death in Pediatrics has focused on infant deaths. As a result of this lack of awareness, pediatricians may be unaware of how to connect families with important resources such as the SUDC Foundation (sudc.org).

In recognition of the need for more consistent investigations and the need for guidance for medical professionals handling these deaths, the SUDC Foundation provided a scientific grant for a collaboration between the AAP and the National Association of Medical Examiners to form consensus guidelines for sudden deaths in Pediatrics titled “Unexplained pediatric deaths: Investigation, certification, and family needs.” These guidelines, which will be published in January 2020 and available online (sudpeds.com), represent an important step in improving care to families affected by sudden pediatric deaths.

The consensus guidelines and Dr. Goldstein’s session are significant steps to addressing the gap in our education around supporting families after pediatric deaths and encouraging pediatricians to remember that their role as the child’s pediatrician should not end with the child’s death.

Erin Bowen, MD, is a pediatrician in practice in Ansonia, Connecticut. She is a member of the American Academy of Pediatrics (AAP) and a member of the AAP Section on Child Death Review and Prevention. She is also a member of the Sudden Unexplained Death in Childhood (SUDC) Foundation Board of Directors, working on the foundation’s Medical Education Initiatives, with a goal of increasing medical education of SUDC to professionals at the forefront of care for affected families.