Understanding the spectrum of fetal loss helping families to cope
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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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Program purpose and goals l.jpg
Program purpose and goals to Cope

  • Support bereaved families

  • Interdisciplinary approach

  • “standard of care”

  • Educational opportunities

  • Community awareness/ support



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Perinatal loss to Cope

Is most often defined as the nonvoluntary end of pregnancy from conception, during pregnancy, and up to 28 days of the newborn’s life.


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


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Miscarriage to Cope

  • Defined as pregnancy < 20 weeks gestation.

  • 10- 25 % of all clinically recognized pregnancies end in miscarriage


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Ectopic pregnancy to Cope-

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


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  • Stillbirth to Cope

  • defined as pregnancy 20 + gestation

  • 26,000 stillbirths occur annually in the U.S.

  • 2 % of all pregnancies end in stillbirth.


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Neonatal death to Cope

defined as birth to the 28th day of life.

19,000 neonatal deaths annually in U.S.


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Factors influencing grief following perinatal loss to Cope

  • Suddenness and unexpectedness of the loss

  • Social and cultural definitions of infant death


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The 4 phases of bereavement to Cope

  • shock and numbness

  • Searching and yearning

  • Disorientation

  • Reorganization

    Glen W. Davidson (1984) Understanding Mourning. Minneapolis: Augsburg Publishing House


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1 to Copest Phase of Bereavement

  • Shock & numbness


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Resistance to stimuli to Cope

Judgment making difficult

Functioning impeded

Emotional outbursts

Stunned feelings

Short attention span

Concentration difficult

Stunned, disbelief

Denial

Time confusion

1ST Phase of Bereavement


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2 to Copend phase of bereavement

  • Searching & yearning


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Very sensitive to stimuli to Cope

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


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3 to Coperd phase of bereavement

  • disorientation


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Disorganized to Cope

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


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4 to Copeth phase of bereavement

  • reorganization


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Sense of release to Cope

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



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4 tasks of mourning to Cope

  • 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.


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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.


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Responses to perinatal loss vary 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.

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.


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Grief work or mourning requires tremendous effort. 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.


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feminine 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.

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


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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.


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Feminine grief 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.


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Feminine grief 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.

  • 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?”


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Masculine grief 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.


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Men and women grieve differently 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.

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.


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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.


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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


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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.


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Children and grief 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,


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Normal thoughts of siblings: 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,

  • “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 l.jpg
Children and death 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,

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?


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How to talk to children about death 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,

  • 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


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Telling a child about a loss 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,

  • 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


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Grandparents’ grief 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,


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Grandparents’ grief 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,

  • 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



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Creating memories remembering

  • 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.


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Footprints remembering


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Infant gowns remembering



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Memory box remembering


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urn remembering


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Locket of hair remembering


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Measuring tape remembering


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Angel bear remembering



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communication remembering


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Silence remembering

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

Cardinal rules of grief support


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3 types of responses to perinatal death remembering

  • Avoidance

  • Insensitive or moralizing

  • supportive


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How can I help someone who is grieving? remembering

  • Listening

  • Sending cards

  • Calling

  • Remembering the baby

  • Maintaining belief

  • Offering hope & support


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Examine defenses and coping styles remembering

  • Develop trust

  • Past coping strategies

  • Past losses

  • Use of substances

  • Assessing family, friends, community support


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What do you say……… remembering

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”


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What do you say when so many say….. remembering

“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


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Qualities of a good listener remembering

  • 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?”


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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


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Providing sensitive care 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

  • 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


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Thing you can say: 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

  • “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”


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What 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 somethingnot 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”


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Spiritual needs 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

  • 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.


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Provide continual support 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

follow up:

  • Perinatal bereavement program

  • Support groups (at VBMC, online)

  • Ceremony of remembrance

  • Walk to remember

  • HANDS memorial garden


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Complicated bereavement 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

history:

  • Unresolved losses

  • Depression

  • Mental illness


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Complicated bereavement 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

  • Identify problems

  • Identify poor coping skills

  • Identify inability to meet physical needs

  • Identify an increase substance abuse

  • Identify self- destructive impulses


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Complicated bereavement 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

Identify:

  • Lack of support network

  • Isolating self

  • Loss is not discussed

  • Loss is negated

  • Radical changes in lifestyle


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Red flags for major depression 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

  • 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


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Identify pathology and refer 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

  • Identify trouble

  • Know when to refer

  • Know your limitations


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Pregnant again…. 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 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


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Support during pregnancy after loss 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

  • 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.


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Thoughts for Caregivers 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

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.


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Avoiding “burnout” 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

  • 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


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