perinatal loss 2012
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Perinatal LossMarch 29, 2012
Sandy Warner RNC-OB, MSN
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Grief is a process, not an event
When your parent dies, you’ve lost your past.
When your child dies, you’ve lost your future
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Uniqueness of Perinatal Grief
Mother and her partner feel like parents, but have no baby to parent
Their baby was not known to others
Taboo topic: sometimes hidden and not discussed
We can never know another’s grief
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Grief is experienced in relation to the significance of the attachment.
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Frequency of Perinatal Loss
Greater than 1 million pregnancy losses yearly in USA25% of all conceptions end in 1st trimesterLate losses occur 2-4% of pregnanciesStillborn rate is 10.7% since 1990
African American stillborn rate is 20%» (AWHONN, 2009)
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Diagnosis of Fetal Death
Confirmation of cardiac standstill for 3 minutes in 2D and color Doppler usually by 2 providers: sonographer and MD
Time to look for etiology, explain to parents why you continue to scan
» (Dr. Donna Lambers, MFM TriHealth Maternal Fetal
Medicine October 2011)
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Estimates of maternal risk factors and risk of stillbirth
Estimated
Condition Rate of Stillbirth
All pregnancies 6.4 / 1000
Pregnancy-induced HTN: Mild 9-51 / 1000
Diabetes treated with diet 6-35 / 1000
Thrombophilias 18-40 / 1000
Smoking > 10 cigarettes/day 10-15 / 1000
Previous stillbirth 9-20 / 1000
Multiple gestation – twins 12 / 1000
triplets 34 / 1000
Advanced Maternal Age 11-14 / 1000
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Family History
Recurrent spontaneous abortions
Venous thromboembolism or pulmonary embolism
Congenital anomaly or abnormal karyotype
Hereditary condition or syndrome
Developmental delay
ConsanguinityACOG Practice Bulletin, Number 102, March 2009
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Maternal History
Prior venous thromboembolism or pulmonary embolism
Diabetes mellitus
Chronic hypertension
Thrombophilia
Systemic lupus erythematosus
(Cont’d)
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Maternal History (Cont’d)
Autoimmune disease
Epilepsy
Severe anemia
Heart disease
Tobacco, alcohol, drug or medication abuse
(Dr. Donna Lambers, MFM TriHealth Maternal Fetal Medicine, October 2011)
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History of Perinatal Grief
1944 – first published work on grief by Lindeman (dealt with death from fire)1962 – “Reaction of RNs with mothers of stillborns” Nursing Outlook1969 – Kubler Ross’s work published1976 – AJN and Contemporary OB Gyn articles published1984 – Davidson’s 4 phases of perinatal loss1985 – ACOG and NAACOG positions statements
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Perinatal Loss Definition
Non- voluntary end of pregnancy from conception, during pregnancy and up to 28 days of the newborn’s life
– (AWOHNN)
Definitions vary from state to state with weight, gestational age etc.
– (AAP and ACOG)
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Davidson’s Four Phases of Bereavement
Shock and numbnessDuration – first two weeks
Characteristics:Short attention span
Difficulty concentrating
Impaired decision making
Denial
No concept of time
“Feels like a bad dream”
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Shock and Numbness con’t.
Interventions:Allow for time
Repeat, repeat, repeat
Use simple terms
Help them to think through decisions
Discourage rapid decisions
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Searching and Yearning
Duration: 2nd week – 4th monthCharacteristics:
High energyAnger/guilt/dreamsWeight loss or gainSleep difficultiesAching arms, may hear baby cryingHeadache, blurred vision, palpitationsResentment
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Searching and Yearning Con’t.
Interventions:Encourage support groups
Anticipatory guidance on normal process of characteristics
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Disorientation
Duration: 5th to 9th monthCan last up to 24 monthsCan also last 3-5 years for multiple pregnancy
Characteristics:Low energyThinks “I am going crazy”Social WithdrawalDisorganizedDepressionLikely to loose support
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Disorientation Con’t.
Interventions:Anticipatory guidance
Assurance
Support Group involvement
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Reorganization/resolution
Duration: 19th- 24th month
Characteristics:Some good days, some bad days
Sense of relief
Renewed energy
Able to laugh and smile again
Milestones are bittersweet
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Reorganization/resolution
Interventions:Be available to listen
Acknowledge baby’s presence
Use baby’s name in conversation
Remember important dates
Meaningful remembrances:Tree, rose bush, flowering plant etc
Donation to memorial fund
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Men and Women Grieve differently
Women:Body image issues
Emotional swings
Need to talk, cry
Increased dependency needs
Fear of intimacy, resuming sex
Jealously
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Differences in Gender Grief cont’
Men:Increase sense of responsibility
Withdrawal from partner/lack of communication
Financial worries
Physical symptoms
Sense of failure
Resentment of attention to partner
Difficulty dealing with tears
Need to “stay busy”
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Tools for Men and Women
Scheduling time to talk to each other
Write a letter to each other
No major life decisions for a year
Addressing returning to work
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Cultural Diversity
Baptism is important for Catholics and other Christian religionsMuslims: see death as natural stage of life. May not want to view baby. Loud crying is discouraged.Jewish: mourning rituals (family member stays with baby but not general viewing). Questionable if baby is named. No autopsy.
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Cultural Diversity con’t.
Native American: vary widelyFocus on transition to afterlife
Ceremonies with food, possessions at gravesite. May leave body exposed.
Amish: Simplistic lifestyle with large
number of children. Loss of child is profound but viewed as God’s will.
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Cultural Diversity cont.
Hispanic/Latino: females vocal with grief and may even shake
Males are stoic and can appear uncaring but are deeply affected.
Mementoes and photos very important.
Respect caregivers
Usually family spokesperson – if caregiver establishes rapport, better outcome.
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Cultural Diversity Cont.
African American:Variety of religious denominationsStrong spirituality and reliance on GodPrayer is common at bedsideFuneral delay until extended family presentVocal grief acceptableImportance of grandmotherAppreciate inclusion of family minister
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Cultural Changes in Mourningby Physicians
“In 19th century America, the process of grieving was detailed and elaborate. The doctor’s letter of condolence was an accepted responsibility and an important part of the support offered to the bereaved.”
NEJM, Vol. 344, No. 15, April 2001
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Cultural Changes in Mourningby Physicians
The condolence letter: Begin with a direct expression of sorrow and personal memory if possible. Avoid revisiting the clinical details of the illness and death.
Continued contact with family i.e., the parents per physician group.
(Dr. Donna Lambers, MFM TriHealth Maternal Fetal Medicine, October 2011)
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Physician Consolation Note(Dr. Donna Lambers, MFM TriHealth Maternal Fetal Medicine,
October 2011)
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Self reflectionfor care giver
Loss is profound experience and invokes own feelings of lossEmotionally draining, review of past experiencesNeed for staff supportEach nurse needs to examine their feelings as well, but not burden grieving family.Tears are OK with grieving family
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What to say:
“I’m sorry.”
“I’m sad for you.”
“How are you doing with this?”
“This must be hard for you.”
What can I do for you?”
“I’m here, I want to listen.”
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What NOT to say:
“You’re young, you can have others.”
“You have an angel in Heaven.”
“This happened for the best.”
“Better for this to have happened now, before you knew the baby.”
“There was something wrong with the baby.”
Calling the baby “It” or “fetus”
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Nursing Care
Provide physical and psychological supportDescription of how the baby will look (before delivery)Include family members if appropriateRefer to chaplain, grief support etcPhotos, mementoesAllow parents and family opportunity to hold infant and say goodbye.Families see nurse as role model with baby.
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Anticipatory guidance for discharge home
Prepare them for the reaction of others.
Encourage offers of help from loved ones
Suggest a plan on how to inform friends.
Supply a few phrases:“We’re not pregnant any more”.
“Our baby has died.
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Referral
Identify trouble
Know when to refer
Reassure them they are not crazy
Refer to Grief Support who has a variety of resources
Maintain contact
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Sibling and grandparent grief
Grandparents often don’t want mom to view baby. (taboo)
Siblings:Developmentally appropriate care
May want to see baby
Many books for children
Fear they themselves or parents might die
Relate to pet’s death sometimes easier
than baby.
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Subsequent Pregnancy
Listen, talk and keep open communication.Allay fearsOffer guidance about potential difference in “bonding” to next pregnancyTry to make this birth experience different from loss experience
Know your patient’s history
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Prepregnancy physician consult and the next pregnancy
Detailed obstetrical historyAsk if parents named baby and use the baby’s name throughout (versus the pregnancy in 2009)Ask to see any pictures they havePreface consult that you realize it will be difficult to talk about the day of birth but how important it isHave plenty of tissues
– (Dr. Donna Lambers, MFM TriHealth Maternal FetalMedicine, October 2011)
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med.umich.edu
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Resources
Compassionate Friends – Illinois
Pregnancy and Loss Center – MN
Resolve through Sharing – WS
SHARE – Missouri
Richard Paul Evans – Angel Statue and memory walk
Local support groups
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Welcome to the website of CLIMB, the Center for Loss in Multiple Birth, Inc. We are parents throughout the United States, Canada, Australia, New Zealand and beyond who have experienced the death of one or more, both or all of our twins or higher multiples at any time from conception through birth, infancy and childhood. We originated in 1987 when a mother whose twin son died very suddenly at birth believed that she was truly the only one – then began to search for "a few" others.
www.climb-support.com
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CHAPTERS INCLUDE: In The Beginning, Pregnancy Moments, Family Tree, Showers, The World Around You, Hello Little One,Your Illness, Hospital Stay, Taking Care of You, Every Day A Miracle, The Day You Died, Funeral Details, Final Resting Place, Hopes and Dreams,Holding You In My Heart, Websites and Support Groups
www.centering.org
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Online Support
www.silentgrief.com
www.babycenter.comGrief section
www.marchofdimes.com