1. Understanding the Spectrum of Fetal Loss: Helping Families to Cope

2. Program purpose and goals
Support bereaved families
Interdisciplinary approach
“standard of care”
Educational opportunities
Community awareness/ support

3. Understanding Perinatal loss

4. 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.

5. Statistics miscarriage, ectopic pregnancy, stillbirth & neonatal death according to the March of Dimes

6. Miscarriage Defined as pregnancy < 20 weeks gestation.
% of all clinically recognized pregnancies end in miscarriage

7. 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

8. defined as pregnancy 20 + gestation
Stillbirth
defined as pregnancy gestation
26,000 stillbirths occur annually in the U.S.
2 % of all pregnancies end in stillbirth.

9. Neonatal death defined as birth to the 28th day of life.
19,000 neonatal deaths annually in U.S.

10. Factors influencing grief following perinatal loss
Suddenness and unexpectedness of the loss
Social and cultural definitions of infant death

11. The 4 phases of bereavement
shock and numbness
Searching and yearning
Disorientation
Reorganization
Glen W. Davidson (1984) Understanding Mourning. Minneapolis: Augsburg Publishing House

12. 1st Phase of Bereavement
Shock & numbness

13. 1ST Phase of Bereavement
Resistance to stimuli
Judgment making difficult
Functioning impeded
Emotional outbursts
Stunned feelings
Short attention span
Concentration difficult
Stunned, disbelief
Denial
Time confusion

14. 2nd phase of bereavement
Searching & yearning

15. 2nd Phase of Bereavement
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

16. 3rd phase of bereavement
disorientation

17. 3rd Phase of Bereavement
Disorganized
Depressed
Guilt
Anorexia
Awareness of reality
Think “I’m going crazy”
Forgetful
Sense of failure
Difficult concentrating
Exhaustion
Lack of energy

18. 4th phase of bereavement
reorganization

19. 4th Phase of Bereavement
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

20. All Phases of Bereavement

21. 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.

22. 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.

23. 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.

24. Grief work or mourning requires tremendous effort.

25. Incongruent 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

26. The experience of grief is highly individualized and gender specific
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.

27. Feminine grief

28. 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?”

29. Masculine grief

30. 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.

31. 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.

32. 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

33. 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.

34. Children and grief

35. 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?”

36. 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?

37. 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

38. 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

39. Grandparents’ grief

40. 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

41. Grieving is not a process of forgetting, but a process of remembering.

42. 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.

44. Footprints

45. Infant gowns

46. Molds of hand / foot

47. Memory box

48. urn

49. Locket of hair

50. Measuring tape

54. Angel bear

55. Questions & comments

56. communication

57. Cardinal rules of grief support
Silence
Admit our own helplessness
Be genuine
Be with the person in grief
Don’t judge another’s grief
Be clear about your issues on death
Know your limitations

58. 3 types of responses to perinatal death
Avoidance
Insensitive or moralizing
supportive

59. How can I help someone who is grieving?
Listening
Sending cards
Calling
Remembering the baby
Maintaining belief
Offering hope & support

60. Examine defenses and coping styles
Develop trust
Past coping strategies
Past losses
Use of substances
Assessing family, friends, community support

61. What do you say……… What do you say when a baby dies and someone says……
“at least you didn’t bring it home”
What do you say when a baby is stillborn and someone says….
“at least it never lived”
What do you say when a mother of three says…….
“think of all the time you’ll have now”

62. What do you say when so many say…..
“you can always have another…”
“At least you never knew it…”
“You have your whole life ahead of you….”
“You have an angel in heaven….”
What do you say when a baby dies and someone says……nothing
What do you say when someone says….
“I’m sorry.”
You say, with grateful tears and a warm embrace,
“Thank you!”
Kathie Mayo

63. Qualities of a good listener
Silence- allow for pauses in conversation
Non-committal acknowledgement- (“um”, “uh huh”, “I see”, “really”)
Door openers- open ended questions-
“could you tell me more?”
“when did you notice this change in your emotions?”
“How are things going with your family?”
“Tell me about it?”
“What helps you get through the day?”
Content paraphrasing- (i.e., what I hear you saying, is…)
Reflective listening- partially restating what was said
Active listening- requires validation. Reflection of feelings relative to the content (i.e., “you’re sounding pretty angry about______. Is that right?”

64. Parenting means taking care of one’s children, so it is not so surprising that parents may feel that they have failed their child. Caregivers should be especially careful not to add to their burden by asking questions that imply responsibility or by saying thing that could be misunderstood as indicating that the death could have been avoided if the parents had done or not done something

65. Providing sensitive care
Be patient
Provide privacy, but don’t avoid the couple
Compassionate care and guidance
Be prepared to answer questions that arise
Offer options
Prepare them for what is to come
Your approach to care and the couple’s decisions will be their only memories of their child’s birth

66. Thing you can say: “I’m sorry” “this must be hard for you”
“ I just don’t know what to say”
“how are you doing with all of this?”
“I’m sad for you”
“I’m here, and I want to listen”

67. What not to say “you can have other children”
“you have an angel in heaven”
“you’re young, you can have more”
“this happened for a reason”
“at least it happened early”
“I know just how you feel”
“you can always have another baby”
“this will bring your family closer”
“at least you have other children”
Calling the baby a “fetus” or “it”

68. Spiritual needs Individualize care
Ask each family what they would like
Offer to call in a clergy member, Rabi, or other individuals
Listen to the couple’s interpretation of the meaning of death
Express your willingness to support their needs
Recognize that fetal personhood, naming, and rituals are often religiously dictated.

69. Provide continual support
follow up:
Perinatal bereavement program
Support groups (at VBMC, online)
Ceremony of remembrance
Walk to remember
HANDS memorial garden

70. Complicated bereavement
history:
Unresolved losses
Depression
Mental illness

71. Complicated bereavement
Identify problems
Identify poor coping skills
Identify inability to meet physical needs
Identify an increase substance abuse
Identify self- destructive impulses

72. Complicated bereavement
Identify:
Lack of support network
Isolating self
Loss is not discussed
Loss is negated
Radical changes in lifestyle

73. Red flags for major depression
15-20% loss or gain in weight
Worsening of symptoms over time
Reclusive ness
Persistent suicidal thoughts
Inability to perform the necessary tasks of living
History of mental illness

74. Identify pathology and refer
Identify trouble
Know when to refer
Know your limitations

75. Pregnant again…. concerns:
Fertility and sexuality
Can I allow myself to feel joy again?
Reminder of past pregnancy and lost baby
Disloyal to other baby
Ticking biological clock
What if…..
When is the best time? Each person must decide for themselves.
Desire to have another baby overrides fear of another loss

76. Support during pregnancy after loss
It is important to discuss her past experiences and her current level of anxiety.
Ask parents to tell their stories, if appropriate.
Review obstetrical history
Referring to the baby who has died, by name, demonstrates your acknowledgment of that baby’s personhood
If possible, put the parents in a different room than the one they used for the previous pregnancy.

77. Thoughts for Caregivers
When healing of the body is no longer our hope,
We request a special healing of the spirit and soul.
When continued life is not a reasonable goal,
We hope for a good and meaningful death to take its place.
Help us to measure success not so much in healing,
As in caring
And help us to see that a job well done may not be
longer life, but a fitting death.
Dispel the myth for us that joy is in life alone.
Help us to overcome the fear of our own death,
So we can be close to the dying in our service to them.
Give us the resources on which to draw for help,
through the really bad times.
And help us to be open to receive what those
whom we serve have to give us in this journey.
In and through it all,
May we never lose a sense of our compassion.

78. Avoiding “burnout” Know thy Self
Be able to listen with your heart as well as your head
Know your boundaries and limitations
Be able to ask for what you need and want
Be able to say “NO”
Be able to separate your own grief issues from your patients.
Realize you are not perfect
Be able to facilitate problem solving and let the patient make the decisions
Be able to laugh and play
Closure
Remember, self care is self esteem