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Understanding the Spectrum of Fetal Loss: Helping Families to Cope. Program purpose and goals. Support bereaved families Interdisciplinary approach “standard of care” Educational opportunities Community awareness/ support. Understanding Perinatal loss. Perinatal loss.
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Understanding the Spectrum of Fetal Loss: Helping Families to Cope
Program purpose and goals • Support bereaved families • Interdisciplinary approach • “standard of care” • Educational opportunities • Community awareness/ support
Perinatal loss Is most often defined as the nonvoluntary end of pregnancy from conception, during pregnancy, and up to 28 days of the newborn’s life.
Statistics miscarriage, ectopic pregnancy, stillbirth & neonatal death according to the March of Dimes
Miscarriage • Defined as pregnancy < 20 weeks gestation. • 10- 25 % of all clinically recognized pregnancies end in miscarriage
Ectopic pregnancy- An implantation of the embryo outside the uterus, most commonly in the fallopian tube. • 2% of pregnancies with no hx of previous ectopic. • 9% with a history of previous ectopic
Stillbirth • defined as pregnancy 20 + gestation • 26,000 stillbirths occur annually in the U.S. • 2 % of all pregnancies end in stillbirth.
Neonatal death defined as birth to the 28th day of life. 19,000 neonatal deaths annually in U.S.
Factors influencing grief following perinatal loss • Suddenness and unexpectedness of the loss • Social and cultural definitions of infant death
The 4 phases of bereavement • shock and numbness • Searching and yearning • Disorientation • Reorganization Glen W. Davidson (1984) Understanding Mourning. Minneapolis: Augsburg Publishing House
1st Phase of Bereavement • Shock & numbness
Resistance to stimuli Judgment making difficult Functioning impeded Emotional outbursts Stunned feelings Short attention span Concentration difficult Stunned, disbelief Denial Time confusion 1ST Phase of Bereavement
2nd phase of bereavement • Searching & yearning
Very sensitive to stimuli Angry Guilty Restless / impatient Ambiguous Testing what is real Irritability Weight gain/loss Sleeping difficulty Aching arms Bitterness Headaches Resentment Palpitations Lack of strength 2nd Phase of Bereavement
3rd phase of bereavement • disorientation
Disorganized Depressed Guilt Anorexia Awareness of reality Think “I’m going crazy” Forgetful Sense of failure Difficult concentrating Exhaustion Lack of energy 3rd Phase of Bereavement
4th phase of bereavement • reorganization
Sense of release Renewed energy Judgment making improved Stable eating and sleeping habits Able to laugh and smile again Increased self-esteem Begin planning future 4th Phase of Bereavement
4 tasks of mourning • To accept the reality of the loss • To work through the pain of grief • To adjust to life in which the deceased is missing • To emotionally relocate the decease and move forward with life Worden, J.W. (2002) Grief Counseling & grief therapy (3rd edition) New York: Springer Publishing.
Experts agree that grief is somewhat predictable as far as its elements, but the length, and intensity of the phases of the process remain undetermined. Each individual’s response is unique. It is vital that health care providers recognize grief, in its varying phases, because behaviors can often be misinterpreted as disinterest, lack of importance, belligerence, and so forth. Parents and family members need to be taught about grief and mourning so that they are better able to recognized the signs in themselves and others. Grief work should be encouraged.
Responses to perinatal loss vary widely, but for many families, the loss is unexpected and they do not know what to do, what to expect, or how to handle their grief.
feminine Open expression Sad, depressed Empty feeling Need to talk Comforted by holding masculine Stoic Aggressive, anger Powerless Task oriented Sexual intimacy Needs partner to feel better Incongruent grief
The experience of grief is highly individualized and gender specific. As can be seen in many ways, men and women respond differently to the same situation. Men often deal with their grief by keeping busy with their work; women cry and talk. Both parents are in emotional pain, but their emotional attachment to their baby is likely at different points and they respond according to social expectations. The woman had an intimate relationship with the pregnancy as part of her own body, but the father experienced pregnancy as an observer.
Feminine grief • Women may feel responsible for her body and her pregnancy. • When pregnancy results in loss, the mother may feel that she has failed and is somehow responsible for what has happened. • Women often ask “why us?” and “what did I do wrong?”
Men and women grieve differently Men and women grieve differently, which can sometimes cause conflict between partners. Women tend to grieve longer than men; they also have physical changes to deal with after the loss. Grieving may last a few weeks, several months, or often, longer than a year. Some feel that grieving never ends but changes in intensity and focus over time.
Grieving the death of a baby may create tension and problems in many relationships. Time spent with the baby by each parent after delivery may also differ, adding another layer of difference., Incongruent grieving is normal in most cases, however, and parents need to be told this. Past loss experiences may also change each parent’s response to this event.
After several weeks, the focus of a couple’s life should begin to move from their grief as all encompassing to the incorporation of their loss into their daily lives with periodic eruptions of sadness. Even when couples feel that they are doing pretty well, they will likely be surprised by the intensity of their response to anniversary dates of their due date, birth date, delivery date and other milestones
Parents who lose their wished for baby feel like parents, but have no living child to parent. Therefore, unfortunately, they are often not treated like parents by society. The unborn baby or newborn is not usually known to others beyond the mother, her partner and perhaps immediate family. Because of the baby’s short, relatively hidden existence and a limited circle of acquaintances, there may be few mourners who can share the grief with the parents. Death tends to be a taboo topic in our society, even more so when it is a baby that dies. From the parents’ prospective, they had been looking forward to a life with this baby, and now that future, too, is lost.
Normal thoughts of siblings: • “did I cause the death?” • “will the rest of my family die, too?” • “will I die, too?” • “I feel guilty to be happy or laugh.” • “who will take care of me now?” • “why wasn’t it me?” • “If God took her because she was so good, will he take me, too?, I’ve been good?”
Children and death Commonly asked questions: • Should we include the children? • Who should tell the children? • How do I tell the child what has happened? • Who will care for the children? • What if I cry in front of the children?
How to talk to children about death • Encourage the child to talk openly about feelings • Allow expression of feelings • Support expression of emotions appropriately to grief and death • Help children deal with their feelings and emotions
Telling a child about a loss • Communication through touch ( arm around child, sit close to child, hold on lap or hold hands) • Talk about things the child experienced or noticed already (pregnancy, parents crying) • Tell child what to expect • Acknowledge and share feelings • Explain death in an understandable manner (simply and honestly) • When appropriate, let child make decisions to attend funeral, etc..) • Encourage child to ask questions
Grandparents’ grief • Instinct to protect their children from pain • Unmet expectations • Grandparent’s feelings go unnoticed • “trigger” past losses • Miles separate families • Hard to understand parent’s needs
Grieving is not a process of forgetting, but a process of remembering.
Creating memories • The moments or hours surrounding stillbirth or neonatal death are precious. • Work at creating memories for this family so they can know and remember their lost baby. • The care you provide now will help them with later grief work. • There is rarely an opportunity to go back and retrieve memories. • Do not rush: consider how important the brief time the parents have with their baby is. Relative to the fact that they had expected and looked forward to spending a lifetime together as a family.
