10TH ANNIVERSARY OF THE FOUNDATION OF THE IRISH STILLBIRTH AND NEONATAL DEATH SOCIETY (ISANDS)
SPEAKING NOTES FOR THE PRESIDENT, MARY ROBINSON, ON SATURDAY 6 NOVEMBER, 1993.
I am very pleased and honoured to have been invited to be with you here today to celebrate the tenth anniversary of the foundation of ISANDS. ISANDS was established in 1983 by a small group of parents who had experienced the grief and trauma associated with the death of their baby at or around the time of birth and who decided to set up a self help group.
ISANDS provides support for bereaved parents and aims to increase awareness among professional and the general public regarding the feelings and needs of families who suffer this particular type of bereavement.
As a mother I have some idea of the apprehension and anxiety that is always at the back of the minds of prospective parents as the birth of their child approaches. To have a baby die before or soon after it is born must be one of the most distressing experiences imaginable and the feelings of sadness, loss, agony and anguish to the parents, overpowering.
There are many reasons why babies die either before or shortly after birth. The baby may be 'immature', incapable of life outside the womb; there may be a congenital abnormality, causing death before of after delivery; there may have been a maternal illness such as pre-eclampsia, diabetes or hypertension. Quite often, however, there is no obvious cause.
In all cases I am sure that the death and the shock will have a profound effect on the parents and it must take a long time to come to terms with their feelings regarding an apparent injustice. Their baby, who is at the very start of its life, is taken from them before it has a chance even to start to live life and enjoy itself.
The death of a baby before or shortly after the birth causes feelings to the parents every bit as severe and as painful - perhaps even more so, as the death of any other member of their family. These feelings are the basis of grief. Grief is a normal process which people must go through in order to come to terms with the loss they have experienced. Grief, in the case of stillbirth or neonatal death, is the process which allows parents to work through the ending of the relationship that they have formed with their baby over the previous few months.
Parents following such a bereavement will experience a whole array of painful emotions. These emotions will range from shock to sadness. The effects of the shock of the death will take time to wear off. Anger is another emotion that is often felt. Anger at the doctors and nurses, anger with God, anger with the baby that has caused the feeling of grief, and anger with yourself, the parent, in that you allowed the baby to die.
At the same time you may experience a feeling of guilt in that something that you did may have caused the death of your baby. This feeling of guilt is a natural reaction to what has happened but is totally unfounded.
Finally there is the feeling of sadness and emptiness. These feelings will last for some considerable time but in the end, while they will never go away, they will become less painful and the parent eventually feels better able to cope with them.
A self help group such as this is a wonderful and selfless way for bereaved parents to try to help other parents come to terms with the reality of their child's death. While there are many professionals who can counsel a parent on the death of their child I think that only a person who has experienced the feelings following such a death can understand to the full extent what the bereaved parent is feeling.
Thank you for your kind invitation to address you here today and to wish you every success with your tenth anniversary celebrations. I am sure that this organisation will continue to grow and to provide much needed support for bereaved families in the future and to increase the awareness among professionals and the general public regarding the feelings and needs of families who suffer this very particular and distressing type of bereavement.