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Pediatrics: MA Center for Sudden Infant Death Syndrome (SIDS)

When a child dies suddenly and unexpectedly from Sudden Infant Death or other causes, it is devastating to everyone. When this happens, we are here to help. The Massachusetts Center for Sudden Infant Death (SID) and the Massachusetts Infant and Child Death Bereavement Program work together to provide counseling and information to families to help them through this very difficult time.

The Massachusetts Center for SIDS is responsible for coordinating services to bereaved families throughout Massachusetts, for children who have died unexpectedly between the ages of 0-3. Funded originally by the SIDS Act of 1974 and subsequently by grants, fundraising and contributions, the Center continues its primary mission of ascertaining the child’s cause of death, notifying parents of medical findings, and offering support to family members during their bereavement. The Center's statewide services Include:

  • Family contact within 24-48 hours of referral
  • Counseling services, bereavement home visits by community-based health care professionals
  • Support group meetings, parent-to-parent support
  • Training and education for health professionals
  • Downloadable Guide for Emergency Department Personnel

The information on this site is designed to help medical professionals understand the best pathway and process for helping parents as they deal with such a tragedy. In addition, there are downloadable patient education materials and further resources.

Initial Care and Follow-Up

When an unresponsive infant is brought to the hospital emergency room, the child is examined and resuscitation is initiated or continued. Parents may be present during the resuscitation process or remain in a private room. An attending nurse, social worker, or other medical professional should be designated as the point person to inform parents of their child's condition. When the mother and father are informed of their child’s death, staff offer emotional support and encourage parents to see and hold their child. Before parents leave the hospital, staff should ascertain how best to contact the parents.

Once the SIDS Center has been notified that a child has died and the family is back home,

SIDS Center staff contact the family to provide crisis counseling, preliminary autopsy information, and notify the family that a bereavement counselor will call to schedule a home visit. In addition, a condolence letter is sent to the family with appropriate information about the grieving process.

Continuing Care

After the initial connection, community-based licensed health care professionals provide bereavement counseling home visits to the family. The goal of this counseling is to mobilize the strengths of the family to assimilate the loss of the infant or child in a way that allows family members to continue to function and to recognize life is worth living and happiness is possible.

Sixteen agencies and over 60 community based licensed health care professionals contract with the Massachusetts Center to provide follow-up to families during the first year of bereavement. During family meetings, the professional provides anticipatory guidance regarding the grieving process; evaluates each family member's response to the death; assesses social support systems; informs the family of available resources; obtains medical information for the Center’s statistical data base; and reviews written autopsy reports. Bereavement home visits and telephone contact are offered during the first year of bereavement and beyond.

Community-based licensed health care professionals who provide bereavement counseling come from various racial and ethnic backgrounds, including African-American, Haitian, Latino, Portuguese, West Indian and Cape Verdean. The Center staff train nurses who are fluent in Spanish, Haitian, French Creole, Portuguese and French. The Center conducts a two-day initial training program and an annual update program to prepare these professionals to provide bereavement support. The programs include information on cultural awareness and sensitivity as well as cultural beliefs regarding death, dying and bereavement. Appropriate bereavement follow-up is enhanced with the assistance of qualified interpreters.

Bereaved Parent Support Group

Support groups for parents aid in the resolution of the early trauma of grief experienced by parents following the sudden unexpected death of their infant or young child.

Parents need to talk about their baby. They need to talk about the events of his/her life as well as death, feelings related to their own grieving, reactions of other children and concerns about subsequent children. The support group provides a safe environment for parents to express their feelings, contact with other parents who share their grief and are at various stages of resolution and is a reliable source of information about the cause of death. It also provides an opportunity to help others.

Meetings are held monthly in Boston and Springfield. Any parent experiencing the death of an infant or young child is welcome, as are grandparents, extended family members, friends and babysitters. No pre-registration is required, and there is no fee. View a list of Bereaved Parent Support Group Meetings.

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