Rituals and Sudden Infant Death Syndrome – The Importance of Remembering

By Bernadette Kiberd and Michael O’Dolbhlin

Death is a fact of life, it is a normal life crisis. While we bury the body, the emotions of those who love the deceased continue. Rituals positively acknowledge that love.’

Each week in Ireland, an infant dies, a victim of Sudden Infant Death Syndrome (SIDS). For the family involved, the recent ‘happy event’ of the child’s birth has suddenly turned into a tragedy. In this setting the ‘mourn­ing process’ has some unique aspects. ‘Rituals’, the ceremonial performance of certain acts, are of tremendous therapeutic value for the family members and help them work through their tragic loss to an acceptance of it in a man­ner that can allow them to continue with their own lives.

Cot Death

Sudden Infant Death Syndrome is the medical term for what in Ireland is commonly called Cot Death. The official definition of SIDS is: “The sudden death of an infant or young child, which is unexpected by history and in which a thorough post mortem examination fails to demonstrate an adequate cause of death.”²

Bereaved families may not be able to quote this definition but the reality of their experience upholds it. Suddenly, without warning, their living child is taken from them and later, no one can really explain why. The death of any child is a tragedy, the lack of warning and explanation in SIDS further compounds the tragedy.

The question therefore, is: What can be done to ease the pain and pave the way for healing? For many families, the suddenness of the death sets the tone of events to come and family members find themselves days, weeks, months, years, later questioning over and over what really happened.

Death is an ending, a finality. It is an ending of a relationship that leaves a gap, a wound, that must be healed in the survivor. There are many state­ments about death, some philosophical, some spiritual, all attempting to make sense of the whole experience.

“Life moves on to death, and to deny one is to deny the other”.³

“Death, when it approaches, ought not to take one by surprise. It should be part of the full expectancy of life”.⁴

It is difficult to account for the death of a child. The ending of a life that has hardly begun, where the deceased has not had the time to live and create the stuff of memories is difficult to understand because the death is out of life’s sequence of events. Erich Fromm’s statement is apt in Sudden Infant Death:- “To die is poignantly bitter, but the idea of having to die without having lived is unbearable”.⁵

One of the strongest statements made by SIDS families is the fear that their child will be forgotten. A large component of grieving lies in remem­bering. In the case of sudden infant death, those who mourn are left with a tiny group of memories. There is a strong need to hold and firm those mem­ories, perhaps even to ‘extend’ the infant’s life through these memories.

The First Ritual – The Funeral

Funerals are understandably sad and painful occasions but in the desire to lessen the pain for grieving families this important ritual is often rushed. Parents’ memory of that time often focuses on the fact that they suddenly found themselves separated from their child with no control over the sequence of events. The panic and confusion that surrounds the discovery of a healthy child dead, too often sets in train a sequence of events that adds to the burden of the tragedy. Imagine, if you will, finding your child dead, screams, frantic phone calls, ambulance arriving, your child whisked away and you, thrust into a frenzy of encountering stranger after stranger. These strangers have suddenly taken possession of your child and only through them can you have access to your child.

The opportunity to hold your child, to spend as much time as you wish with him/her is often withheld. Few parents are invited to take their child home with them after the funeral service. What started as a panic rush to hospital to save the child’s life (as parents would see it) marks the end of the family as it was.

Photographs

The precious child is no longer there and sometimes well meaning relatives or friends, in the belief that their presence may upset the parents, remove the very objects like cots, feeding bottles, nappies, etc., that were an acknow­ledgement of the infant’s existence. These objects played an important part in the child’s life and the parents need time to accept they are no longer needed. Like photographs, their presence often brings comfort. Disposing of them is a statement in itself and many parents express anger that they were not given any choice in the matter.

Favourite Toy

While we expect to someday bury our parents, burying our children is some­thing we don’t think about or plan for. Time and time again bereaved parents recall how well-intentioned relatives felt the burden of the tragedy was so great that parents should not have to be left with funeral arrange­ments. Too often funerals are arranged and over before any sense of reality about their child’s death takes place. Funerals are important occasions, they provide the opportunity to publicly grieve. They also provide a wealth of opportunity for people to say or do what they wish to mark the passing away of their loved one. Siblings recall with warmth the special drawing they did for their baby sister/brother that was placed in the coffin. Parents derive comfort in burying their child with their favourite toy. Families need time to prepare for this event, to plan and discuss what they want to do.

Tradition may work against them. When the death is that of an infant there is often a distinct lack of aids to deal with it. Where, when an infant dies, is the religious service that can be so comforting in sending an adult to his/her final rest by invoking God’s blessing and forgiveness? Some adults believe it is inappropriate to hold a full funeral service for a child. Parents, shocked and bewildered may be influenced by this thinking and miss the opportunity to bury their child as they would wish. What could have been a positive memory for the family may now be loaded with deep regrets.

Seldom would parents be in possession of a family plot. Planning for their future certainly did not include buying a burial place.

Now thrust into the situation, relatives may suggest burying the child in the grandparents’ or relatives’ plot. For some parents it is important that their child is not alone, being buried with a relative gives comfort. For others burying their child in their own family plot means that someday they will be bodily together again.

While it is impossible to predict the future, the location of the grave can present problems. If, in time the family moves home, it can be extremely difficult for them to leave their child’s grave behind. Visiting the grave is an important ritual for many families and distances can act as a painful barrier. Knowing that someone will visit and tend to the grave can help consider­ably.

The Ritual of Remembering

In the process of mourning, great discussions usually take place about events that the deceased played a part in and the more of these memories mourners have the greater the wealth of opportunity to keep the deceased alive in their memories. For SIDS families the lifetime of their child provided limited opportunity for others to experience the child. The death will undoubtedly touch everyone and raise strong emotions at the time but there may be few people who have shared in the child’s life and therefore have limited events to reminisce. Parents’ fears that the child will be forgotten will often be well founded. It is common that relatives, friends and neighbours may place less emphasis on the effect of the death because it was a child, whose life was short. In time anniversaries of birth and death often go unacknowledged, reinforcing that in truth the child has been forgotten.

“When a person is born we rejoice, and when they’re married we jubilate, but when they die, we try to pretend nothing has happened”.⁶

Perhaps because the ‘life’ experience of the child was short, the need to remember is greater. Mementos may be limited. Photographs are important and that parents need to look at them over and over again is often misunder­stood. Holding on may be as important as letting go. Great joy is experi­enced when someone discovers a photo of the child that had previously gone unnoticed. Photographs, foot-prints, hair-locks, taken after the child has died may seem strange to others but can provide a vital link for the family. Siblings, who are born after the dead child, have no memories of their own and so photos enable them to share in the memory of their brother or sister.

Society chooses to mark ‘life events’ and we place great emphasis on these occasions. Tradition, often seen as negative, has profound meaning at these times. The opportunity to mark events with a variety of rituals is a positive experience. Life often presents a second chance, death removes opportuni­ties. Gone is the future, the dreams, the plans, the significance of the past grows.

For the bereaved family, their child’s life, although brief, carries a depth of meaning that starts long before the child’s birth. To understand this phenomenon we must look back. The pregnancy, whether a good or unpleasant experience for the family, holds memories. Not least may be the memory of whether it was planned or not. In either case the subsequent death of the child can raise give rise to strong reactions. Guilt may focus on the remembered feeling of not wanting the baby.

The sense that the child’s death is a punishment from god may be strong. Anger may focus on all the efforts to become pregnant now wasted. With whom can these memories be shared? They may, in themselves evoke conflict between grieving partners and confusion with siblings.

The Significance of Rituals in a Child’s Death

Bereaved parents create many rituals. They may visit the grave at certain times, they may even turn it into a mini garden that provides them with an opportunity to continually care. Sudden infant death does not just rob parents of their precious baby – parents also lose their ‘job’ as carers, teachers, guiders to their child. Even if they have other children – these are not substitutes. Children are not inter-changeable and the emptiness, the uselessness, the rejections that parents feel needs to be subjugated in some form.

By keeping their child’s spirit or soul alive through the various rituals they employ, they, in effect prepare themselves for retirement – a retirement from the role of parents for that child. Through the use of rituals, that retirement, when it gradually arrives, is voluntary, not thrust upon them as the death of their baby was.

Some parents imagine their baby growing up, going to school, first communion, graduation, 21st. birthday – all the things they had looked forward to. Ask one of these parents the age of their child and they will give you the current biological age, not the age at death. Others do the opposite – for them their baby never ages, they answer with the age of death. Because some parents may be discouraged by the well-meaning but misguided friends and relatives from talking about their child’s life and death they need other outlets. The writing of poetry or stories is a popular ritual for the bereaved. Through the formality and stylish language of poetry, parents can express their feelings openly, whether maudlin, mawkish, sad or happy, even if they never show their writing to others. The therapy is in the ex­pression and the writing, not the publication. Poetry and writing serve the same purpose for many, allowing them to bare their souls and inner-most thoughts without fear.

Formal rituals can give parents permission, for a short time, to acknow­ledge their child’s life and death and to commemorate that precious life. The Irish Sudden Infant Death Association holds an annual memorial service where families and friends commemorate the short and precious lives of their dead children. During the service a candle is lit for each child and families take home a separate rose. Many families extend the ritual by plac­ing the rose on their child’s grave. The Association’s ‘Book of Remembrance’ is another example of the positive role ritual can play in supporting the bereaved. Each family is invited to enter their child’s name, date of birth and date of death into the book. Many families accompany their entry with a personal written message to their child. The book is present at each remem­brance and memorial service. Viewing is a private function and families are provided with a personal copy of their child’s entry. The Association’s annual newsletter devotes a section to personal stories and poems. Here parents and siblings, relatives and friends share their thoughts on their loved ones.

Talking is an important part of Irish life. The ‘cup of tea’ or ‘pint and chat’ is a known and respected phenomenon and provides an integral support structure. Bereaved parents often sadly experience a withdrawal of this support. For many, the subject of death is difficult, when it’s a child’s death the subject is usually avoided.

Bereaved parents describe how neighbours and friends avoid them, crossing the street rather than meeting them. When they do meet, everything and everyone but their dead child is discussed. The isolation this evokes is indescribable and normal grief feelings of pain, anger, regret and guilt are submerged deeper. Perhaps this is why bereaved parents enjoy meeting each other!

Rituals can introduce stability into lives ripped asunder by Sudden Infant Death. They can restore a degree of normality and purpose to a life that can sometimes be without direction. They can aid the mind to locate the tragedy in its place rather than allowing it to dominate all of life. By giving tragedy a place and function of its own, it can be incorporated into life without destroying it.

(Author’s note: The process of remembering and letting go are not in con­flict but are complementary)

References:

1. Temes, R. Living With An Empty Chair. 1984, Irvingron Pub.
2. SIDS Global Strategy, 3rd. SIDS International Conference. Norway ’94.
3. Miller, H. The Wisdom of the Heart, Creative Death, 1947.
4. Spark, M. Memento Mori, 1918.
5. Fromm, E. Man for Himself 1947.
6. Becker, E. The Denial of Death, 1973, NY, Free Press.

ISDA may be contacted at: Freephone 1800 391 391, or 873 2711, Carmichael House, 4 North Brunswick Street, Dublin 7.

Bernadette Kiberd is the Registrar of the National Sudden Infant Death Register. Michael O’Dolbhlin is Chair of the Support Committee of ISIDA and a cot death parent.