Understanding the Spectrum of Fetal Loss Helping Families

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 28 th 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

1 st Phase of Bereavement • Shock & numbness

1 ST 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

2 nd phase of bereavement • Searching & yearning

nd 2 • • • • 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

3 rd phase of bereavement • disorientation

3 rd 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

4 th phase of bereavement • reorganization

4 th 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

All Phases 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 (3 rd 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 • • • 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

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, 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 • • 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”, • • “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 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 • • 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 • • • “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: • • 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” 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