The impact of a Sudden Infant Death Syndrome (SIDS) death presents unique grieving factors and raises painful psychological issues for the parents and family as well as those who love, care for, and counsel them. SIDS parents must deal with a baby's death that is unexpected and unexplained, a death that cannot be predicted or prevented, an infant death so sudden that it leaves no time for preparation or goodbyes, and no period of anticipatory grief. In many cases, parents of SIDS babies are very young and are confronted with grief for the first time.
SIDS often occurs at home, forcing parents and siblings or other children to witness a terrible tragedy and possibly scenes of intense confusion. In some cases, the parents themselves are the ones who find the child dead and they must always live with that memory. In other cases, the parents may feel overwhelming guilt or anger if the death occurred while the child was in daycare. They may feel that the baby might not have died if they had been caring for it. "All too frequently, a SIDS loss is not socially validated in the same way other deaths are.
Probably the most stressful and anxiety-provoking act in human existence is the separation of a woman from her newborn infant. The response to this, which humans share with most of the animal kingdom, is an overwhelming combination of panic, rage, and distress.
- RUSKIN, IN HORCHLER AND MORRIS 1994,16
SIDS parents, relatives, daycare providers, health care professionals, and other adults feel helpless in trying to explain the unexplainable to other young children who may have been present at the time of the baby's death. It is especially difficult for children to understand why a baby died when it didn't appear to be sick. Also, in some cases parents are required to explain SIDS to adults who are misinformed or know nothing about the syndrome.
[The grief SIDS parents feel is like a]...continuous, crashing waterfall of pain...SIDS is a forced separation that will last forever. In the beginning, survivors are so shocked that their bodies and minds cannot even begin to comprehend all that has been lost...Shock and disbelief overtake most survivors so they can only vaguely feel their own empty arms and the rage that will eventually come full force.
SIDS parents also are very often plagued by "if only's" that they are never able to resolve. They mentally replay such thoughts as: "If only I hadn't put the child down for a nap when I did." "If only I had checked on the baby sooner." "If only I had not returned to work so soon." "If only I had taken the baby to the doctor with that slight cold."
SIDS parents also need to know the value and importance of obtaining reliable information. They need to have access to professional support; and they need to be aware of the great benefits other parents have gained from attending support groups and sharing their experience or by expressing their thoughts and feelings in writing.
Moreover, bereaved SIDS parents often find that health care professionals are as perplexed as they are and cannot provide them with any explanation for the death. Although most health professionals know about SIDS, not all can provide parents with the information they so anxiously seek. They are unable to provide answers to questions such as: "Did my baby suffer?" "What are the possible causes of SIDS?" "What can I do to prevent another child from dying of SIDS?" "Are there symptoms I should have known about that could have prevented the death?"
A single SIDS death can have a ripple effect on as many as 100 people who came in contact with the baby or the family. "The expanded circle of concern" can include parents, extended family, neighbors, coworkers, child care providers, health care and emergency personnel, clergy, funeral directors, and other care providers.
SIDS parents and family members need to be around people who will offer them support in a nonjudgmental way; they need to know that some things in their lives are permanent and there are certain people on whom they can truly depend. Other family members, friends, or professionals can provide this sense of dependability and assurance by allowing parents both permission and ways to express their grief and talk about their confusion. SIDS parents need to talk and they need someone to listen-really listen-even if they tell their story, express their doubts and fears, and ask the same questions repeatedly. What SIDS and other bereaved parents are really saying is, "Let me tell you about my pain; let me talk about my child with you; please do call my child by name; please do not let my child be forgotten."
Friends and family members should try to do all they can to show their concern and help the parents in keeping alive memories of their baby. For most SIDS parents, it is also reassuring for others to try to mention special things they noticed about the baby and to remember the child's birthday or the anniversary of the death. By extending these personal and sensitive gestures, loving and concerned relatives, friends, and caregivers can become a source of reassurance and comfort for the grieving parents.
Some SIDS babies are so young when they die that family members and friends never had a chance to welcome them. They may have missed sharing the parents' excitement over the birth and affirming the child's existence. Many individuals do not understand the depth of parental attachment to a very young child. Bereaved SIDS parents should not be made to feel that others don't want to hear them, that others won't permit them to openly grieve. The parents of SIDS babies want their child's short life to matter not only to them, but to their families and friends, to the others in their "circle of concern," to the world.
In spite of the trend towards earlier bonding between fathers and babies, the influence of cultural expectations about men and grief persists and is powerful. Typically, the societal view of parental loss is not the same for the father as the mother. Most of the literature on parental bereavement still tends to focus on the mother's grief. Often, men are not acknowledged as experiencing grief; or more importantly, men are not taught that it's necessary to grieve and are discouraged from demonstrating signs of grief openly. Bereaved fathers frequently feel that they are the forgotten mourners and are often referred to as "second class grievers".
Fathers are expected to be strong for their partners, to be the "rock" in the family. All too often fathers are considered to be the ones who should attend to the practical but not the emotional aspects surrounding the death; they are expected to be the ones who should not let emotions show or tears fall outwardly, the ones who will not and should not fall apart. Men are often asked how their wives are doing, but not asked how they are doing.
Such expectations place an unmanageable burden on men and deprive them of their rightful and urgent need to grieve. This need will surface eventually if it is not expressed. It is not unusual for grieving fathers to feel overwhelmed, ignored, isolated, and abandoned as they try to continue to be caregivers and breadwinners for their families while their hearts are breaking. "Fathers' feelings [often] stay hidden under layers of responsibility and grim determination". Bereaved fathers often say that such strong emotions are very difficult to contain after their child's death. Fathers often fear that they will erupt like volcanoes if they allow themselves to release these feelings and so, too often, fathers try to bury their pain with the child who died.
It is most important that a father's grief be verbalized and understood by his partner, other family members, professionals, coworkers, friends, and by anyone who will listen. Fathers need to try to free themselves of stereotypes and societal expectations about men and grief; they must be able to tell others that their grief is all they have from their child's brief life. Fathers repeatedly say that for their own peace of mind, they (and those who care about them) need to move away from this mind set and allow them to grieve as they are entitled. Continued: next week
