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
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
1. shock and numbness
2. Searching and yearning
3. Disorientation
4. Reorganization
Glen W. Davidson (1984) Understanding Mourning. Minneapolis: Augsburg
Publishing House
1st Phase of Bereavement
•Shock & numbness
1ST Phase of Bereavement
• Resistance to stimuli
• Judgment making
Intensity
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difficult
Functioning impeded
Emotional outbursts
Stunned feelings
Short attention span
Concentration difficult
Stunned, disbelief
Denial
Time confusion
Shock and Numbness
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7
6
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3
2
1
0
Series1
1 3 5 7 9 11 13 15 17 19 21 23
Duration (months)
2nd phase of bereavement
•Searching & yearning
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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
Searching and Yearning
10
8
Intensity
nd
2
6
4
nn
2
0
1 3 5 7 9 11 13 15 17 19 21 23
Duration (months)
Series1
3rd phase of bereavement
•disorientation
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
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Intensity
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Disorientation
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Series1
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2
1
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1 3 5 7 9 11 13 15 17 19 21 23
Duration (months)
4th phase of bereavement
•reorganization
4th Phase of Bereavement
Reorganization
• Sense of release
• Renewed energy
• Judgment making
8
Intensity
improved
• Stable eating and
sleeping habits
• Able to laugh and smile
again
• Increased self-esteem
• Begin planning future
10
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Series1
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2
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1 3 5 7 9 11 13 15 17 19 21 23
Duration (months)
All Phases of Bereavement
All Phases of Bereavement
10
Intensity
8
Series1
6
4
Series2
sbb
Series3
Series4
2
0
1 3 5 7 9 11 13 15 17 19 21 23
Duration (month)
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
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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.
Grief work or mourning
requires tremendous
effort.
Incongruent grief
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feminine
Open expression
Sad, depressed
Empty feeling
Need to talk
Comforted by holding
masculine
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Stoic
Aggressive, anger
Powerless
Task oriented
Sexual intimacy
Needs partner to feel
better
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
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?”
Masculine grief
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.
Children and grief
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
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
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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.
Footprints
Infant gowns
Molds of hand / foot
Memory box
urn
Locket of hair
Measuring tape
Angel bear
Questions &
comments
communication
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
3 types of responses to perinatal
death
• Avoidance
• Insensitive or moralizing
• supportive
How can I help someone who is
grieving?
• Listening
• Sending cards
• Calling
• Remembering the baby
• Maintaining belief
• Offering hope & support
Examine defenses and coping
styles
• Develop trust
• Past coping strategies
• Past losses
• Use of substances
• Assessing family, friends, community
support
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”
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
Qualities of a good listener
• Silence- allow for pauses in conversation
• Non-committal acknowledgement- (“um”, “uh huh”, “I see”,
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“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?”
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
Providing sensitive care
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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
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”
What not to say
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“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”
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.
Provide continual support
follow up:
• Perinatal bereavement program
• Support groups (at VBMC, online)
• Ceremony of remembrance
• Walk to remember
• HANDS memorial garden
Complicated bereavement
history:
• Unresolved losses
• Depression
• Mental illness
Complicated bereavement
• Identify problems
• Identify poor coping skills
• Identify inability to meet physical needs
• Identify an increase substance abuse
• Identify self- destructive impulses
Complicated bereavement
Identify:
• Lack of support network
• Isolating self
• Loss is not discussed
• Loss is negated
• Radical changes in lifestyle
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
Identify pathology and refer
• Identify trouble
• Know when to refer
• Know your limitations
Pregnant again….
concerns:
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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
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.
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.
Avoiding “burnout”
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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