Research Grant Project

Robert’s Program is a clinical service at Boston Children’s Hospital and Harvard Medical School that is offered for families who have lost a child suddenly and unexpetedly, without apparent cause.  Robert’s Program focuses on sudden unexpected death in pediatrics (SUDP), which encompasses sudden infant death syndrome, sudden unexpected infant deaths (SUID), and sudden unexpected death in childhood (SUDC).  The program’s efforts are directed at helping a family understand the reasons for their child’s death to the greatest extent possibe, while supporting them through a very difficult time.  The interdisciplinary team includes clinicians and scientists from the fields of general pediatrics, neurology, genetics, cardiology, metabolism, endocrinology, general pathology, neuropathology, palliative care, and bereavement support.  The program takes a precision medicine approach to diagnose underlying vulnerabilities that may have contributed to the child susceptibility to sudden death, including extensive phenotyping and genetics.  Even when no direct cause is established, families who have participated in Robert’s Program report comfort from receiving a thorough investigation and participating in a leading research effort.

Baby’s Breath has received funding and will cover the cost of enrollment for Canadian families.  Families will receive complete genetic sequencing and phenotyping. Results and conclusions will be shared with the families via teleconference call. If you would like to participate, click on the link to register.  Someone from Baby’s Breath will be in touch to go over the details.

Research Grant Project


News Article

United States Consumer Product Safety Commission – Seated Products

Could SIDS be caused by unrecognized brain infections?

Video Analyses of Sudden Unexplained Deaths in Toddlers

Genetics Determinants of Sudden Unexpected Deaths in Pediatrics

New evidence that children dying form SIDS and SUDC are not “normal”.

Researchers identify potential genetic link in sudden infant deaths

New research suggests a potential genetic mutation may play a role in some SIDS cases.

Researchers Warn Parents About Using Monitors to Prevent SIDS Following Study

This news article is based on a research letter that was published in the Journal of American Medical Association (JAMA).

New SIDS research to study protein link

This news article published by the University of Adelaide discusses an Australian study on SIDS. It looks at whether changes in brain levels of Amyloid Precursor Protein (APP) in infants may be a marker for potentially deadly breathing difficulties.

SIDS research discovers how a brain abnormality may cause infant death

This Boston Business Journal article discusses new research by Dr. Kinney and her team published in the journal Pediatrics which appears to suggest a brain abnormality as one cause of SIDS.
Date: November 11, 2013

Brainstem abnormalities found in SIDS infants, in all kinds of sleep environments

Investigators at Boston Children’s Hospital report that many infants dying suddenly and unexpectedly, in all kinds of sleep environments, have underlying brainstem abnormalities and are not all normal prior to death.
Date: November 11, 2013

Review Articles

Dysfunction of NaV1.4, a skeletal muscle voltage-gated sodium channel, in sudden infant death syndrome: a case-control study

Results of a UK study which found rare mutations associated with impairment of the breathing muscles were more common in babies who had died from SIDS than in healthy infants.

“The Grief of Mothers After the Sudden Unexpected Death of Their Infants

The results of a study conducted by Dr. Rick Goldstein, Program Director of the Robert’s Program on Sudden Unexpected Death in Pediatrics and Assistant Professor of Pediatrics, Harvard Medical school published in the American Academy of Pediatrics’ journal, Pediatrics.

Risk factors for SIDS

JAMA Pediatrics Rebecca F. Carlin, MD; Rachel Y. Moon, MD. Published December 2016

Molecular Autopsy for Sudden Unexpected Death

JAMA Pediatrics Ali Torkamani, PhD, Evan D.Muse, MD, PhD, Emily G. Spencer, PhD, Manuel Rueda, PhD, Glenn N.Wagner, DO, Jonathan R. Lucas, MD, Eric J. Topol, MD. Published October 2016.

The Disappearance of Sudden Infant Death

JAMA Pediatrics Ernest Cutz, M.D. FRCPC. Published February, 2016

The Brainstem and Serotonin in the Sudden Infant Death Syndrome

Annual Review of Pathology: Mechanisms of Disease Hannah C. Kinney, George B. Richerson, Susan M. Dymecki, Robert A. Darnall, and Eugene E. Nattie Published May 29, 2009

The Sudden Infant Death Syndrome

The New England Journal of Medicine Hannah C. Kinney, M.D., and Bradley T. Thach, M.D. Published April, 2009