Robert's Program on Sudden Unexpected Death in Pediatrics is a clinical service offered to families across the United States who have lost a child (under the age of 18 years) suddenly and unexpectedly, without apparent cause. Our efforts help a family understand the potential reasons for their child's death while providing support and psychoeducation as they navigate their grief. Our interdisciplinary team uses the most current medical knowledge and methods to find answers for bereaved families while being leaders in research and discovery. Our services are provided with sensitivity to the complexities that come with child loss.
Any infant or child death where the outcome was unexpected and not associated with criminal intent is eligible. Infant deaths with risk factors for SIDS (sleep position and environment) are eligible. Children may have existing or prior medical conditions where the death was not expected. Families can self-refer. The child did not have to be a patient at Boston Children’s Hospital to enroll. The child’s autopsy does not have to be performed by a medical examiner, even though this is rarely the case. The child’s autopsy does not have to be complete to enroll.
The services provided in our evaluation is free of charge to all families. For non-Massachusetts families, there may be a cost associated with handling and processing charges by your medical examiner’s office to ship samples to our office/laboratory. There is no insurance reimbursement for medical attention after a child has died.
Robert’s Program offers a depth of evaluation that is unparalleled in other settings for any family seeking our help. Our program offers some services and in-person care that can only be available to those who live locally. For families who are distant, we conduct intakes and results sharing via web-based conferencing. The information we can provide in web-based interactions is limited by medical license restrictions, but the essential medical assessment and psychoeducational support are all possible.
The time it takes for a complete evaluation of a child’s case varies based upon the individual circumstances. Our goal, however, is for the evaluation to be completed within six to nine months of enrollment. We work to keep you informed and updated on the progress of the case as we go on. Even after you have received the results of our assessment, any case may be revisited in months or years to come. We never consider a case “closed” and we encourage families to remain in touch and contact us with questions as new research develops.
Robert’s Program is funded entirely through generous donations and research grants. To support our work, please consider donating to our fund. Every donation goes a long way to support the families in our program.
You may donate online at bostonchildrens.org/RobertsProgramGiving or by sending a check made out to Boston Children's Hospital. If sending a check, please include “to benefit Robert’s Program” on the memo line. Checks can be sent in the mail to our address at 300 Longwood Ave., Boston, MA 02115 (BCH3201).
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Robert’s Program on Sudden Unexpected Death in Pediatrics (SUDP)
