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Providing Care to Bereaved Parents During Infant and Child Death Awareness Month

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A child's death is regarded as among the most traumatic, incomprehensible and devastating of losses, with the potential to precipitate a crisis of meaning for bereaved parents. -- Gerrish, N.

Many people are surprised at how long parents may grieve the loss of a child. The period of a year of grieving is acknowledged by many religions and cultural practices, but commonly, parents experience significant grief for much longer. Parents frequently report waves of grief that include reliving the traumatic details of the injury or visions of the person suffering the final stages of a fatal illness. Anniversaries of the death and important dates, such as the child's birthday, bring recurring waves of grief, often for several years. Family events, such as graduations, marriages, and births, reawaken grief. These events are reminders of the hopes and dreams shattered by the child's death. -- Wender, E.

Parents and siblings identified two major categories of change experienced by bereaved parents. These changes occurred in their personal lives (e.g., emotions, perspectives and priorities, physical state, work habits, coping/behaviors, spiritual beliefs, and feeling something is missing) and relationships (e.g., family, others). -- Gilmer, M.J.

Grief professionals and researchers have been clear in their findings that continuing bonds with their children can be an important component in both the initial and long-term adjustments that bereaved parents must face. Amanda Thompson, a social worker, writes:

This theory suggests that bereaved individuals develop and maintain a spiritual connection or ongoing attachment with the deceased through activities such as keeping belongings, creating legacies, or viewing their loved one as a guardian angel. These strategies allow the bereaved to maintain a 'sense of presence' with the deceased in the absence of physical contact and are consistent with the common belief that loved ones will be reunited in the afterlife. These connections can provide comfort, ease the transition from the past to the future, and facilitate coping strategies for both adults and children.

In 1988, President Ronald Reagan proclaimed the month of October as National Pregnancy and Infant Loss Awareness Month. The MISS Foundation has been the leader in expanding the focus of October to being Infant and Child Death Awareness Month. (Their position statement can be found here.) MISS not only provides education to professionals and the public about the dynamics of grief that bereaved parents experience, but has an international reputation in providing immediate and ongoing support for bereaved parents and families.

Dr. Joanne Cacciatore , the founder of the MISS Foundation, reminds us that "Remembering our loved ones who have died is not a newly created tradition just for Infant and Child Death Awareness campaigns that have been developed in the last decade or so. In fact, there are long traditions in many different cultures of remembering our dead during October and into November."

What does this mean for those who know and care for bereaved parents?

  • Be aware that for many persons, from a variety of cultural and religious traditions, participating in activities during October and November to remember loved ones who have died, particularly children, can be very important. Whether you work with someone who is unexpectedly hospitalized, a resident in a long-term care center, a person in the workplace, or any other setting, be sensitive to what these may involve. For some, it may be a photo of a loved one with a candle (so you might want to have battery-operated candles on hand). For others, it may include flowers, an altar or special prayers and rituals. Being unable to participate in family or community events may be a source of spiritual distress.
  • While we are aware that grief has its own trajectory, at times we may forget that for bereaved parents, grief "is forever." The two general recurring stages of grief are profound sadness/emptiness and acceptance/yearning -- both of which can occur throughout the parent's life. Grief can be triggered by many events: the child's birth or death day; holidays; celebrations and observances' one's own or a loved one's illness; or by simply by a moment when the grief appears with no warning. Be sensitive that this may occur.
  • Gently invite persons to share more about their children, as bereaved parents long for their child to be remembered. Use the child's name, ask about their personality (remember, parents of stillbirths or miscarriage often still carry an idea of what their child would be like), and acknowledge not only the parent's lifelong grief, but their strength and courage as well. Living without one's child changes everything one once knew, including their image of themselves, their relationships, their view of the world and their sense of the holy.
  • Don't forget siblings or grandparents of a child who has died. Research has shown that both groups also are deeply impacted by the death and have unique grief needs, which may also become a source of spiritual distress.
  • No matter how long it has been since the death of their child, parents may need a source of support. Know what resources are in your community, and don't forget the importance of social media.
  • If you have the time, find and participate in one of the many cultural and religious activities that may be happening in your community during October and November. It may be a walk or candle-lighting for Infant and Child Awareness Month. Christian traditions observe All-Saints Day. Day of the Little Angels (Día de los Angelitos) and Day of the Dead (Dios de los Muertos) are celebrated not only in Mexico, but in parts of the United States, Latin America, Europe and other areas of the world. Jizo Remembrance Ceremonies are held for those who hold Zen beliefs. By participating in one of the observances, you can grow in your understanding of varied ways of honoring children who have died as you participate in the bereavement community.

We all have the opportunity during October and November to provide much-needed care to bereaved parents and family members. Being aware of the potential impact of "forever grief" is the first important step.

Rev. Sue Wintz is a board certified health care chaplain with over 30 years of clinical, administrative, educational design, development and teaching experience. She is Director for Professional and Community Education at HealthCare Chaplaincy Network in New York, and managing editor of the online professional journal PlainViews. Sue is a past president of the Association of Professional Chaplains. A bereaved parent, she and her family celebrate Dios de los Muertos in their home and community.

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