Perinatal loss 2012

Perinatal LossMarch 29, 2012

Sandy Warner RNC-OB, MSN

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

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

Grief is experienced in relation to the significance of the attachment.

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)

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)

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

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

Maternal History

Prior venous thromboembolism or pulmonary embolism

Diabetes mellitus

Chronic hypertension

Thrombophilia

Systemic lupus erythematosus

(Cont’d)

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)

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

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)

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”

Shock and Numbness con’t.

Interventions:Allow for time

Repeat, repeat, repeat

Use simple terms

Help them to think through decisions

Discourage rapid decisions

Searching and Yearning

Duration: 2nd week – 4th monthCharacteristics:

High energyAnger/guilt/dreamsWeight loss or gainSleep difficultiesAching arms, may hear baby cryingHeadache, blurred vision, palpitationsResentment

Searching and Yearning Con’t.

Interventions:Encourage support groups

Anticipatory guidance on normal process of characteristics

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

Disorientation Con’t.

Interventions:Anticipatory guidance

Assurance

Support Group involvement

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

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

Men and Women Grieve differently

Women:Body image issues

Emotional swings

Need to talk, cry

Increased dependency needs

Fear of intimacy, resuming sex

Jealously

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”

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

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.

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.

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.

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

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

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)

Physician Consolation Note(Dr. Donna Lambers, MFM TriHealth Maternal Fetal Medicine,

October 2011)

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

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.”

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”

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.

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.

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

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.

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

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)

med.umich.edu

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

                                                                            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

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

Online Support

www.silentgrief.com

www.babycenter.comGrief section

www.marchofdimes.com