Who We Are
The CJ Foundation is a national non-profit organization devoted to eliminating the tragedy of sudden unexpected infant and early childhood deaths, supporting grieving families, advancing medical research, furthering parent and professional education and advocating for the health and survival of all children.
Through a variety of initiatives, the Foundation educates parents and all who care for infants on the steps they can take to reduce the risk of a baby dying from SIDS or other sleep-related deaths. The Foundation gives voice to SIDS (Sudden Infant Death Syndrome), SUID (Sudden Unexpected Infant Death) and SUDC (Sudden Unexplained Death in Childhood) families who suffered an unexpected and unexplained loss and creates a healing, supportive community whose overriding goal is for no other families to suffer.
The CJ Foundation’s medical research grants, risk-reduction and bereavement support grants, education materials, outreach and advocacy efforts and support services are the foundation for one day eliminating SIDS, SUID and SUDC while ensuring that affected families are comforted and supported in their grieving process.
What We Do
- Operate a competitive grant program which advances the field. The medical research grants are evaluated by the Foundation’s Medical Advisory Board which is comprised of prominent researchers and other experts. The program grants are evaluated by leading SIDS, SUID and SUDC professionals and advocates.
- Distribute no and low- cost, high-quality, educational materials to childcare providers, hospitals and healthcare providers.
- Lead advocacy efforts in Washington, D.C.; assist families to participate at the federal level and guides them in local advocacy efforts.
- Foster open communication with and is a resource for medical examiners, coroners, first responders and law enforcement.
- Educate parents and families and provide accurate, relevant and up to date information.
- Provide compassionate bereavement support and/or resources for support for families.
- Facilitate and provides thought leadership at a national level.
Unexplained Infant Deaths
My baby’s death certificate indicates cause of death as undetermined. Is this SIDS? Why isn’t it being called SIDS?
Fewer and fewer medical examiners and coroners are using SIDS (Sudden Infant Death Syndrome) as a cause of death. While the definition of SIDS is: "sudden death of an infant under one year of age which remains unexplained after a thorough case investigation, including performance of a complete autopsy, examination of the death scene and review of the clinical history," the word "syndrome" incorrectly implies a diagnoses or illness, when it is in fact a diagnosis of exclusion. There are no clinically significant findings that indicate cause of death.
Five years ago, your baby’s cause of death probably would have been ruled SIDS. The fact that there is no national standard for terminology for these types of infant deaths AND that medical examiners/ coroners are increasingly reluctant to use SIDS as a cause of death has led to parental and bureaucratic confusion. The CDC’s National Center for Health Statistics lists ALL of the following as definitions of SIDS for coding purposes:
- Sudden Death in Infancy or SDII
- Sudden Infant Death or SID
- Sudden Unexplained Death or SUD
- Sudden Unexplained (unexpected) Death in Infancy or SUDI
- Sudden Unexplained Infant Death or SUID
- Sudden plus (Unexpected) or (Unattended) or (Unexplained)
- Death plus (Cause Unknown) or (in Infancy) or (Syndrome)
- Infant Death plus (Syndrome)
- Presumed SIDS, Probably SIDS, Consistent with SIDS
Defining SIDS, SUID, & SUDC
SIDS(Sudden Infant Death Syndrome): Is defined as the sudden death of an infant under one year of age which remains unexplained after a thorough case investigation, including performance of a complete autopsy, examination of the death scene and review of the clinical history. SIDS is a diagnosis of exclusion, assigned only once all known and possible causes of death have been ruled out.
SUID(Sudden Unexpected Infant Death also known as sudden unexplained infant death): is defined as the sudden and unexpected death of an infant in which the manner and cause of death are not immediately obvious prior to investigation. How are SUID and SIDS different? SUID can be caused by metabolic disorders, hypothermia or hyperthermia, neglect or homicide, poisoning, or accidental suffocation. Some SUIDs are ruled SIDS, others are sleep-related deaths but ruled Uundetermined...
SUDC(Sudden Unexplained Death in Childhood) is defined as the sudden and unexpected death of a child over the age of twelve months, which remains unexplained after a thorough case investigation including performance of a complete autopsy, examination of the death scene, and review of the clinical history. Similar to SIDS, SUDC is a diagnosis of exclusion - assigned when other causes of death have been ruled out. SUDC is not new, but it is rare, with a reported incidence of 1.2 deaths per 100,000 children, compared to 54 deaths per 100,000 live births for SIDS . Presently, SUDC cannot be predicted or prevented. Risk factors are not well understood. Most SUDC deaths occur between the ages of 1 and 3 years, but researchers have looked at cases of children as old as 11.Next...