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Mental Health After Loss & Supporting Mom Pregnant Again After Loss Lindsey M. Henke, MSW, LICSW Mental Health Therapist Founder of Pregnancy After Loss Support [email protected] OBJECTIVES

1. Describe and identify the common mental health symptoms a mom often experiences after a perinatal loss.

2. Describe and identify the symptoms of perinatal and postnatal mood and disorders the mom pregnant again after loss experiences during a subsequent pregnancy and in the postpartum period.

3. Describe, identify, and implement interventions and resources of support for the mom pregnant again after a loss to reduce anxiety and depressive symptoms in women during a subsequent pregnancy, with the of increasing a successful postpartum attachment with baby in the postpartum period along with improvement of mom’s mental health and wellbeing.

3 THE STORY STARTS HERE

Parents are attaching earlier to babies due to technology. (Rich, 2014) (O’Leary, 2014)

4 THE UNEXPECTED

Losses--miscarriage, neonatal death, stillborn, selective termination, elective abortion-- are all frequent exacerbating factors for postpartum anxiety and . (Freeman, 2011) - A SYMPTOM OF

Grief is a normal and healthy reaction to a pregnancy loss.!

Grief is defined as:

“Emotional reaction to loss shown as shock, numbness, , , , or anxiety.”(Hughes, 2003)

“The affective, physiological, and psychological reactions to the loss of an emotionally important figure, and it can include severe and prolonged distress.” (Brier, 2008)

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PERINATAL GRIEF

Grief associated with pregnancy loss differs in ways from grieving others: • No shared history • Limited memories to reflect on • Attachment to an anticipated future with unborn child that is no more (Lim & Cheng, 2011)

Women who experience perinatal grief also report of: • Guilt/ • Sadness • Anxiety • Emotional Detachment • Somatic Symptoms

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PERINATAL GRIEF

Intensity of Grief is not determined by the length of pregnancy.

“It is thought that the more the mother has experienced or comprehended the reality of the baby the higher the level of grief.” (Klier, 2002)/(Kersting, 2012)

“Contrary to these findings, however, are a number of studies have evaluated the association between length of gestation and level of distress after perinatal loss, and could not find an increase in psychological distress with higher gestational age.” (Kersting, 2012)

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PERINATAL GRIEF

Common Themes: • / – due to stigma and silence • Invalidation - diminishing of loss by friends and family • Lack of support from significant people in lives • Views loss as major life event – Traumatic event

We lack ‘cultural scripts’ to help bridge the gap between loss parents and greater society. (Randolph, 2014)

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COMPLICATED GRIEF

Grief – natural and non-pathological

Complicated Grief – Symptoms are more disruptive, pervasive, or long lasting than normal grief response. (Kersting, 2012)

More likely if death was: • Sudden • Violent

• Traumatic

Usually peaks within approximately 6 months of loss, same to be found true for perinatal grief. (Lin, 1996) (Kersting, 2012)

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COMPLICATED GRIEF & PERINATAL LOSS

Common Themes/Reported Feelings:! • Sudden/unexpected – no time to prepare • Early losses – no funeral or ritual • Guilt/Self-blame • Bodies have failed them/undermined femininity

Risk Factors:! • History of pregnancy loss/repeat losses • Previous mental health history • Lack of social supports – family & friends • Poor marital relations/lack of support from partner • Lack of living children • TFMR (Termination for Medical Reasons)

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WHEN GRIEF LEADS TO PMADs

“Some form of psychological distress often accompanies pregnancy loss.” (Brier 2004)

! Risk Factors for PMADs in Loss Moms:! • Younger women • Previous mental health history during or before pregnancy • Lower income • Complicated grieving factors ! Most Common Psychological Disorders:! • Depression & Anxiety

“Experiencing pregnancy loss places women at higher risk

for depression.”(Mann, 2008)

12 NEXT STEP IN THE JOURNEY: PREGNANCY AFTER LOSS

50-80% of women who experience a pregnancy loss, stillbirth, or neonatal death go on to have a subsequent pregnancy within a year to

18 months after the loss. (Mills, 2014) PAL – AN UNIQUE EXPERIENCE

Pregnancy after loss is complex.

“Continued grief for one baby while wanting to be happy for a new baby coming.” – J. O’Leary

14 COMMON SYMPTOMS

In studies women report: • High rates of symptoms of anxiety on the pregnancy anxiety scale, including: – Increased and anxiety – More worries and – Reports of PTSD symptoms

• Depressive symptoms • Continued Grief

A previous loss is a risk factor during a subsequent pregnancy for PMADs.

15 COMMON THEMES

• New definition of pregnancy • Loss of innocence and in ‘good outcome’ and own body • Conflicting /grief or hope/fear • Isolation – alone and different in journey, “We are changed forever” •

Duration of previous pregnancy does not necessarily determine intensity of grief or anxiety in the subsequent pregnancy.

16 ARE MENTAL HEALTH SYMPTOMS DURING PAL PATHOLOGICAL?

Pathological Non- Pathological

• In studies women report • “Since Pregnancy anxiety is high rates of symptoms of based on a real threat and is anxiety on pregnancy justified anxiety, it does not anxiety scale. necessarily have to be classified as pathological.” • Report of PTSD symptoms (Bergner, 2007)

• Grief – normal experience of • Depression symptoms loss

17 REASONS FOR STANDARDS IN CARE

“Depression and anxiety associated with previous prenatal loss shows a persisting pattern that continues after the birth of a healthy subsequent child.” (Blackmore, 2011)

• Evidence points to increase in risk for anxiety and depression during and post subsequent pregnancy.

• Competing evidence treats PAL as a normal response to a unique experience of pregnancy after loss.

Either way – a standardized treatment would benefit both.

18 TREATMENT INTERVENTIONS FOR PAL

Research States: • Standards of care or interventions are not generally available (Cote-Arsenault, 2004)

• Implies a need for structured support (Campbell-Jackson, 2014)

• Emotional & psychological support improves parents experience of PAL (Mills, 2014)

• Combined research points to an ideal standard of care for PAL parents but one has yet to be made/put into place. – New task force developed as of 10/2015 from International Stillbirth Alliance. – Current models of care: • Central Manchester University Hospitals: Rainbow Clinic • Sunnybrook Subsequent Pregnancy Program – Pilot Project as of 2014

19 GOALS OF HOW TO SUPPORT – WHAT TO DO

Areas of intervention/support/resources providers can implement or include in their care of the PAL mom.

1. Nurture grief 2. Reduce anxiety 3. Develop social support & access to resources

Women often identify in studies that they have medical needs that are ‘large needs’ of support during PAL. (Cote-Arsenault, 2004)

20 NURTURE GRIEF

Encourage attachment to baby who died to create space for for new baby.!

R21 “Facilitating mothers’ (fathers’) expressions of grief for one baby and attachment to a new baby helps preserve the space in the family that the dead child would have inhabited.” – J. O’Leary

21 ATTACHMENT After loss, parents report having less attachment and increased fear of attaching to subsequent pregnancy and baby, a protective factor. – Presents as: • Struggles to make plans for baby’s arrival • Restrained expectations • Refuses celebrations until arrival

Ways Providers Can Help: • Realize one baby does not replace another • Use child’s name that died when appropriate • Perinatal Parenting • Encourage attachment to deceased baby – letter writing to deceased baby • Recommend bonding techniques – reading to new baby, talking to new baby, kick counting

22 REDUCE ANXIETY

Goals: • Develop and advocacy skills

• Provide medical reassurance when appropriate

• Normalize PAL experience

23 REDUCE ANXIETY Recommended Intervention Methods:

• Individual Therapy and/or Therapeutic Support Group - Distress Tolerance Skills - Emotional Regulation Skills - MBSR - Advocacy Skills

• CAM - Mindfulness/ - Meditation - Acupuncture - Yoga - Spirituality

24 REDUCE ANXIETY

Ways Providers Can Help: • Acknowledgement of grief and • Lead with • Provide concrete medical information • Remember loss moms need reassurance

Recommendations from PAL moms: ! Extra visits ! Extra and supportive telephone calls ! Ultrasound Technicians who know story – check for heartbeat first ! Heartbeat checks – find heartbeat first ! One main point of contact/provider – clinic of care model not ideal for PAL mom ! Expect ER and L&D visits

25 PEER SUPPORT

“Helps members recognize their commonalities, remember their babies that died, develop carrying relationships and learn new coping skills.” (Cote-Arsenault, 2004)

Realizing one is not alone in this unique experience

Ways Providers Can Help: • Educate yourself and moms of emerging services/resources – PALS online groups – In-person support groups in your area – Other bereavement resources

26 IN-PERSON PEER SUPPORT

Local In-Person Support Group Listing at Pregnancy After Loss Support ONLINE SUPPORT

https://pregnancyafterlosssupport.com ONLINE SUPPORT AT PALS

11 private, moderated From a PALS’ community Facebook groups: member:

• Pregnancy After Loss Support Group • Trying To Conceive After Loss Support “PALS has made me feel Group • Parenting After Loss Support Group like I am not alone; there are • Pregnancy After Loss Support Group others who are struggling. for Dads Others who understand the • Pregnancy After First Trimester Loss highs, the lows, the fear, the • Pregnancy After Second Trimester Loss anxiety and heartache all • Pregnancy After Third Trimester Loss rolled into one. I lost my • Pregnancy After Infant and Child Death daughter in my second • Pregnancy After TFMR Support Group trimester. PALS website has • Pregnancy After Loss with No Living Children given me what I think all of • Pregnancy After Loss of a Multiple us our looking for—hope.” -Kerri

29 BIRTH AND POSTPARTUM

“Women with history of pregnancy loss are at an increased risk for depression and anxiety, including PTSD after the birth of a subsequent child.” (Giannandrea, 2013)

Ways Providers Can Help: • Understand some detachment after birth can be normal • Detachment should dissipate over time

• Anticipate anxiety during early parenting of this baby • Lead with patience and understanding • Remind them this is a different baby • Acknowledge concerns – reassurance might still be needed

• Know the risk of PMADs are increased and educate patient • Reassure what is normal and what isn’t and when to seek help

WALKING AWAY WITH KEY POINTS

• Grief vs. PMAD’s

• Normalize grief as a unique experience and healthy response to a pregnancy loss

• Nurture Grief

• Reduce Anxiety

• Validate!!!!

• Offer resources to peer support – bereavement and subsequent pregnancy

• Encourage advocacy for care and reassurance with medical services and professionals.

• Normalize pregnancy after loss as a unique experience

Loss moms are at a higher risk for anxiety and depressive symptoms after a loss and during and after a subsequent pregnancy.

31 CONCLUSION OTHER RESOURCES LOSS: • Still Standing Magazine • The MISS Foundation • First Candle • Star Legacy Foundation • Compassionate Friends • SHARE Pregnancy and Infant Loss Support

PREGNANCY AFTER LOSS: • Tips for Professionals when Treating the Mom Pregnant Again After Loss • 10 Facts About Pregnancy After Loss • See Me, Feel Me • In-Person PAL Support Group Online Listing

INFERTILITY • Resolve

MENTAL HEALTH FOR POSTPARTUM • PSI • Postpartum Progress

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Realize One Baby Does Not Replace the Other Tips for Health Professionals When 9 Sometimes PAL couples admit to having a hard time realizing that this is a different baby. Encourage the couple to continue to find ways to connect with their child who died in order to differentiate between this Treating the Mom Experiencing baby and the one they lost. Parents need health professionals to acknowledge the loss of their child who died and understand that a new baby does not take away the of losing the other. Pregnancy After Loss (PAL) Use the Child Who Died’s Name in Conversations Compiled by Lindsey M. Henke MSW, LICSW 10 When working with the PAL parents, if you don’t know the name(s) of the child/children who have died, then ask them gently. If you do know the name(s), use them in conversations with the PAL parents when Understand the Unique Emotional Experience of PAL appropriate. Using the child’s name will validate the significance of the loss and build trust between the 1 Many women feel alone and confused when pregnant again after loss. They often feel like they no longer fit parents and professional. into to the loss community, but they also feel uncomfortable in the mainstream pregnancy world. Encourage Understand that Detachment After the Birth Can Be Normal them to reach out to others who have been through pregnancy after loss (PAL) and consider referring them 11 Feelings of detachment from the baby born after a loss is quite normal at birth. PAL parents report having a to Pregnancy After Loss Support’s online community at PregnancyAfterLossSupport.com. hard time coming to terms with realizing that this is a different baby. Like during pregnancy, they also Remember the Loss Mom’s Need for Reassurance struggle with attaching after birth due to fear of losing this baby too. This detachment should dissipate over 2 Women who are pregnant again after a loss often need a great deal of reassurance. Extra doctor’s visits, time. However, if attachment issues arise that are of concern, consider referring the PAL parent to the extended time during these visits, and understanding care from the hospital’s labor and delivery appropriate resources for support to help build a secure attachment for both baby and parents. department/emergency room will help reduce some anxiety in the mom, as well as provide attentive care Educate Yourself and Your Patient on Emerging Resources for Support with the added level of reassurance that the PAL mom needs. 12 Studies have shown that peer-to-peer relationships have been a significant source of support for women Help Reduce who experience perinatal and postpartum mood disorders as well as bereaved parents (specifically for those 3 Doctors’ appointments and ultrasounds can provoke high anxiety for the PAL mom. Most PAL moms who have lost a child during pregnancy or within the first year of that child’s life). Encourage the PAL parents received the news and confirmation that her baby had died during a past doctor’s visit or ultrasound check. to connect to other PAL moms and dads through in-person support groups or reputable online support Taking into consideration that these visits can be stressful and even bring back past traumas for the mom is communities such as Pregnancy After Loss Support. vital. One way to reduce this anxiety is to begin by reassuring the mom that the baby is alive, either through a Doppler check in the doctor’s office or during an ultrasound. Anticipate Anxiety During Early Parenting of This New Baby 13 Professionals working with PAL parents should expect the parents to experience anxiety over the health of a Provide Concrete Medical Information baby born after a loss. Be patient and understanding. Acknowledge their concerns and gently remind them 4 PAL parents need truthful and concrete medical information about the development and health of their baby. that this is a different baby, constantly reassuring them about the health of the baby, as long as the baby is PAL parents might need information repeated or explained further. Please remember to be patient with their healthy. Also, be mindful of the PAL parents’ history of loss and use your professional judgment to questions, as they are not questioning your professional training; they are insecure about this pregnancy and determine if all that is needed is extra reassurance. If the PAL parents are with larger underlying the health of their baby. issues, including postpartum mood and/or anxiety disorders, for which they are at higher risk, refer them to the appropriate resources. Understand that the Relationship between a Loss Mom and Her Body is Complex 5 A woman pregnant again after a loss often has a hard time trusting her body to do what it is supposed to do Sources during the pregnancy and birth of her baby. Her trust in her body has been broken after the loss of her Blackmore, E., Cote-Arsenault, D., Tang, W., Glover, V., Evans, J., Golding, J., O’Conner, T., (2011). Previous prenatal loss as previous baby, and sometimes that lack of trust is accompanied by guilt. Understanding this loss of trust predictor of perinatal depression and anxiety. The British Journal of . 198:373-378. can help medical doctors advise a woman on her birth options, as well as direct the PAL mom to further Giannandrea, S.A.M., Cerulli, C., Anson, E., & Chaudron, L., H. (2013). Increased risk for postpartum psychiatric disorders mental health services if needed. among women with past pregnancy loss. Journal of Women’s Health. 22(9):760-768. Gold, K., Boggs, M., Mugisha, E., Palladino, C., (2012). Internet message boards for pregnancy loss: Who’s on-line and why? Know That Risk of Mental Health Disorders are Increased for PAL Parents Women’s Health Issues. 22-1, e67-e72. 6 PAL moms and dads are at an increased risk for mental health disorders, including perinatal and postpartum mood and anxiety disorders. Research shows that women who are pregnant again after a loss report having Mills, T., (2014). Improving support in pregnancy after stillbirth or neonatal death: IMPs study. School of Nursing, Midwifery and Social Work at the University of Manchester. 1-10. higher symptoms of anxiety and depression during their subsequent pregnancy compared to those who have not experienced a previous loss. Keep this in mind when assessing if parents need further mental health O’Leary J, Thorwick C, Parker L: The baby leads the way: Supporting the emotional needs of families’ pregnant following Perinatal loss. 2nd edition. Edited by Ragland, K. Mpls, MN; 2012 support and a referral to a mental health therapist or a support group during this pregnancy. Ross - White A. (2014). Pregnancy following a loss, Once the baby arrives. PAIL Networks Facilitator’s Handbook. Acknowledge Their Grief and Their Fears 7 PAL parents are often afraid that this baby will die too. Acknowledging their fears with phrases like, “It makes sense you would feel this way,” and “This must be very difficult for you,” can help the PAL parents Pregnancy After Loss Support strives to support women pregnant after a loss and encourage them to choose realize you are empathetic towards their loss and haven’t forgotten how they have arrived at this place of hope over fear while nurturing grief. Pregnancy After Loss’s services include an online magazine of articles written pregnancy after loss. by both professionals and women who have also experienced PAL, peer-to-peer support through a Facebook forum of seven moderated support groups and a mentor program, and a collection of resources for both the PAL Know that it’s Normal for PAL Parents to be Hesitant to Attach During Pregnancy mom and the professionals treating the PAL Mom. Health care professionals can request flyers about Pregnancy 8 Couples who are pregnant again after a loss may struggle with making plans for the baby’s arrival. They After Loss Support to give to patients experiencing PAL by emailing [email protected]. often have restrained expectations and use language like, “if the baby lives.” PAL parents may resist attending prenatal and childbirth classes. It is also quite common for PAL parents to refuse celebrations such as baby showers as well as purchasing any items for the baby until he or she arrives. Parents struggle with attaching due to fear of this baby dying too. Remember to normalize this experience for the PAL parents if Pregnancy After Loss Support they question their actions. PregnancyAfterLossSupport.com | [email protected] Bibliography

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