“I was at a routine dental office visit a few weeks after my daughter was born. I remember being reclined in the chair, the bright overhead light and the scent of latex.  Images of surgical masks whipped through my mind.  Fear rushed through my body and I shook uncontrollably.  My body felt hollow and numb but also heavy and out of control.  In that moment I truly believed I was having another emergency c-section.”

This quote is from a woman who experienced a traumatic birth.  She is the mother of a beautiful baby and has had many moments of joy and connection, but also times of panic and fear.  “Mini movies” of her daughter’s birth play in her mind throughout the day.  She deleted the photos of her daughter in the NICU and she wants to disappear when her friends talk about pregnancy.  The birth didn’t end when her baby was born; it followed her from the hospital and it has interfered with many aspects of her life.

Research reveals that between 33-45% of women perceive their births to be traumatic. (Beck, 2013).  Birth trauma is defined as “an event occurring during the labor and delivery process that involves actual or threatened serious injury or death to the mother or her infant.  The birthing woman experiences intense fear, helplessness, loss of control and horror.”  (Beck, 2004a, p. 28).

Approximately 9% of women experience postpartum post-traumatic stress disorder (PTSD) following childbirth. Most often, this illness is caused by a real or perceived trauma during delivery or postpartum. These traumas could include:

• Prolapsed cord
• Unplanned cesarean
• Use of vacuum extractor or forceps to deliver the baby
• Baby going to NICU
• Feelings of powerlessness, poor communication and/or lack of support and reassurance during the delivery
• Women who have experienced previous trauma, such as rape or sexual abuse
• Women who have experienced a severe complication or injury related to pregnancy or childbirth, such as severe postpartum hemorrhage, unexpected hysterectomy, severe preeclampsia/eclampsia, perineal trauma (3^rd or 4^th degree tear), or cardiac disease

My therapy work with mothers is typically after a traumatic birth.  The more I learn about the mother’s labor and birth experience, the more I can understand what care and education could have better supported her during  birth.

The “3 E’s” – explain, encourage and empathize – can be a useful framework for obstetrical staff in lessening the risk of a traumatic birth.  

Explain  

When explaining a process, options or a procedure, always include the woman in the discussion of her own care.  There is a distinct difference in hearing a discussion and being a part of one.  If plans change, explain what is happening and what is needed to correct the situation.

Encourage

The connection a mother has with those caring for her during childbirth is deep — you are present during one of the most emotional, unpredictable times in her life.  Encouragement is empowering and can offer the mother a sense of control.  Encourage questions.   If plans change, discuss possible alternatives.   Using “we” in conversations shows alignment and rallying together.

Empathize 

Women in labor yearn for companionship, support and empathy.

Phrases such as “I know,”  “I’m here,” and “Yes” are phrases that connect staff with a woman’s experience when she feels pain, fear, disappointment or frustration.

I’ve heard many birth stories over the years; devastating stories of physical compromise, intense fear and loss of the baby’s life.  How the mother is cared for, is what she remembers.  The tone of your voice.  The gentleness.  The validation of feelings.  One of my clients was unaware she was being rushed for an emergency cesarean.  She said in all of the chaos and in a knee-chest position, she extended her arm and a nurse held her hand.  Beauty within terror.   It was a simple gesture and it has been the most powerful, healing memory for her.   Even in the midst of an emergency, someone saw her need.  Someone saw her.

Obstetric staff has great influence on how a mother remembers her birth experience.  Expressing empathy and explaining and encouraging a laboring and postpartum mom can influence her health and well-being.  New mothers who receive the “3 Es” can better transition to home, experience less anxiety, have more positive feelings about themselves and improved bonding with their babies.

Karin Beschen is a Licensed Mental Health Counselor specializing in reproductive and maternal mental health.  She also serves as a volunteer co-coordinator for Iowa for Postpartum Support International.

Additional Resources

Postpartum Support International 

PaTTCh (Prevention and Treatment of Traumatic Birth)

Improving Birth

References

Beck, C. T. (2004a). Birth trauma: In the eye of the beholder. Nursing Research 53(1), 28-35.

Beck, C. T., Driscoll, J.W., & Watson, S. (2013). Traumatic Childbirth New York, NY: Routledge.

I won’t lie, I cringe when I think back to how frustrated and concerned I was when after two months of trying, I still wasn’t pregnant.

A friend had recently told me how she achieved pregnancy success with the help of a pricey fertility monitor so I tried that and luckily for me, I found out I was pregnant soon after.

My first pregnancy and delivery were the definition of text book. My post birth complications, which consisted of a late presentation of Group B Strep, C. difficile, and a blood clot, were not in my birth plan BUT I quickly made peace with it. I refused to allow myself to be consumed by my unexpected hospital stay or my lengthy recovery period ahead of me. I had a beautiful baby girl to focus my energies on; I would heal and get better; life was good.

I didn’t have a problem getting pregnant after that. Actually the opposite happened. When we weren’t trying; I would get pregnant. After two miscarriages, the second which occurred after a two week period of bed rest, ended in an ambulance ride, D&C, and 10 hour ER visit, I didn’t think much worse could happen. When I became pregnant for the 4th time in four years I was very anxious, but by the time I rolled into my 2nd trimester I was able to settle into the excitement of being pregnant and was finally able to feel confident that we were in for smooth sailing. At that point I had convinced myself that I had paid my dues to the pregnancy gods and nothing else could go wrong.

Unfortunately that wasn’t the case. During a routine 2nd trimester checkup my obstetrician could not detect my baby’s heartbeat. It was any expectant mom’s worst nightmare. Nothing can prepare you for the moment you find out that your baby is laying lifeless inside of you. Nothing. My life has never been the same since….

Unbeknownst to many, stillbirths cause approximately 24,000 deaths a year in the United States resulting in approximately 2000 babies dying each month – more than deaths resulting from SIDS and prematurity combined. Even with numbers like these, stillbirth remains one of the most understudied and underfunded public health issues today.

I was completely overwhelmed and unprepared to handle the unthinkable tragedy that I was facing. And I quickly learned I wasn’t alone. Soon after I was admitted to the hospital, I realized that the hospital staff – doctors, nurses, psychologists and social workers – didn’t always know what to say or how to say it. In retrospect I realized that many were lacking the tools needed to handle stillbirth. It seemed that my nurses found it difficult to switch gears between the “lively” hustle and bustle of the Labor & Delivery floor and the “barren” dark hole that my room signified. I felt neglected by my nurses. Not once did any of my nurses stop to see how were coping. I felt like a leper; as if my stillbirth was contagious.

With that being said, if I take a step back, I completely get it. The death of an unborn baby is completely out of most people’s comfort zones.

Nurses play such an integral part of the recovery process; it is critical that they are provided with the most relevant and appropriate training. In my case it would have made such a difference in my journey if the nurses were better equipped to handle the delicate nature of my experience while in their care.

There’s no such thing as one-size-fits-all advice on how to help a family suffering through a stillbirth. But what I can suggest to a nurse faced with a patient (or family member) who is struggling is to not be afraid to find the empathy and compassion that is needed to address the situation. Nurses are some of the most caring people on the planet – they went into one of the hardest and most caring professions out there. That said, even the most caring people benefit from refreshers on the effective and sensitive responses when patients have difficult circumstances. There is a lot of pressure to offer up the perfect words that will make the family “feel better” but the truth is, just being a caring presence is what is most necessary.

Stillbirth is a taboo subject across all levels of society, but if we work together to break the silence and remove the stigma around stillbirth, we will be better equipped to further the care needed to improve stillbirth outcomes for all involved.

There are many resources for nursing and parents including:

• Star Legacy Foundation
• First Candle
• The Action for Stillbirth Awareness & Prevention Coalition
• The Wintergreen Press & Babies Remembered
• 1st Breath
• Open to Hope
• Now I Lay Me Down To Sleep
• The Kelly Ryan Foundation
• The Tears Foundation
• MISS Foundation
• The Compassionate Friends
• Share Pregnancy & Infant Loss Support

Additional Resource Lists

• http://nnekahallunhinged.weebly.com/infant-loss-resources.html
• https://www.nowilaymedowntosleep.org/families/family-resources/agencies-and-organizations/
• http://www.hopeafterloss.org/support/resources/
• http://stillbirthday.com/birth-plans/

Some Helpful Tips from a Mom to Nurses

• Acknowledge their loss; tell the grieving family that you are sorry for their loss.
• Be patient with them.
• Refer to the baby by their name, if one was given.
• Make yourself available to the family if they want to talk
• And if they do want to talk, listen to the family. Don’t feel like you need to have a response.
• Let them cry, offer tissues.
• Please continue to be patient.
• Wait to talk about “arrangements” until after labor and the family has some time to let their new reality settle in.
• Continue to offer to the family the option to hold the baby, any sort of mementos, pictures such as Now I Lay Me Down To Sleep
• Please be respectfully persistent. Don’t give up. The family may say they don’t want pictures, a memory box, or to hold the baby- but that could change. There are no “do-over’s”.
• Please make sure that all hospital staff that enters the mothers room is aware of the situation and are sensitive to it.
  It’s ok to not have the answers; no one is expecting you to.
• Please don’t say- “sometimes these things just happen” or “you’re young, you can have more”.
• Please encourage them to consider a perinatal autopsy or additional extensive testing. It is in the best interest for them with regards to subsequent pregnancies and for the future understanding for us to understand why stillbirths occur and how we can begin to improve outcomes.
• Never forget to validate their feelings.
• And one of the most important things you can do is to reassure the mom that they are not at fault. I can assure you, they are blaming themselves and you have the power to take that weight off their shoulders.

Susan is a nurse in a Neonatal Intensive Care Unit (NICU) with a strong human milk culture.  Every day she provides evidence-based lactation care and support to mothers who have critically ill infants. She understands fully that human milk can be a lifesaving medical intervention and received two days of on the job education regarding the critical importance of human milk and breastfeeding.  Seeped in this culture, Susan also believes that nurses and health professionals have an obligation to help families make an informed decision and while it would be ideal if all infants were exclusively breastfed by their own mothers, this is not always feasible or possible.

Susan is also challenged personally Having experienced infertility for 10 years, she has decided to adopt a newborn. She has read the literature and met with a lactation expert .  Susan is aware that even with great effort and time investment, she may never achieve a full milk supply.  She is very concerned about giving her infant formula and asked the lactation expert about accessing Pasteurized Donor Human Milk (PDHM).

The Human Milk Banking Association of North America (HMBANA) is the organization that oversees non-profit milk banks in the United States.  Even though the number of HMBANA milk banks is increasing in the United States and the amount of PDHM has also increased substantially in recent years, PDHM is still prioritized to preterm or vulnerable infants in the hospital setting.  HMBANA milk banks do sometimes dispense PDHM to the community setting.  However, in these instances, it is for infants with special medical needs and usually requires a prescription from a health care provider.

So for Susan who is planning to adopt a healthy full-term infant, she will likely be unable to access PDHM.  Susan is considering informal milk sharing in order to supplement what milk she is able to produce through inducing lactation.  It is important for nurses and other health professionals to be aware that informal milk sharing does exist and also to help families make an informed decision.

There are many reasons why women or families choose to pursue informal milk sharing in addition to the reasons in Susan’s story, including:

• Women who have glandular hypoplasia or breast surgery and are unable to develop a full milk supply
• Men and women who adopt children and may be unable to induce lactation
• Women who have had bilateral mastectomy prior to childbearing
• When a woman dies in childbirth and her family members wish to honor her plans to breastfeed
• A short term need for supplemental human milk due to early breastfeeding challenges or a delay in Lactogenesis II

Although very beneficial in all of the above cases, informal milk sharing is not without any risk because just as antibodies, white blood cells, and other immune components are transferred in human milk, viruses can also be transferred.  In addition, some medications transfer into human milk (most in very small amounts, but some in larger).

Mothers who are considering informal milk sharing should consider the following steps:

1. Get a complete health history from the donor mother. It is essential to understand  the donor mother’s past and current medical history as well as lifestyle choices is essential.  It is also acceptable for the mother to ask the donor mother for a copy of her serologic testing from pregnancy.
2. Find out how the milk will be expressed, labeled, stored, and transported. The donor mother, first and foremost, should have an excess supply of milk that she does not need for her infant. When mothers express milk, care should be taken to ensure the safety of the milk.  At our institution, we have mothers wash their pump equipment with hot, soapy water and rinse well after every use and have them sterilize the equipment daily.
3. What types of containers will be used for storage (the recipient mother could supply these to the donor mother) and how will the milk be stored (fresh or frozen) and transported from the donor mother to the recipient. Conversations between recipient mother and donor mother should be on-going to ensure safety of the milk. In this area the research literature has also evaluated  the use of home heat treatment to “pasteurize” the milk. Research has shown that heat treatment of the milk on a stovetop is not the same as Holder pasteurization, this technique has the ability to destroy viruses.  It is important to note that heat treatment also destroys some of the beneficial components of human milk.

Recently, the American Academy of Nursing published a position statement regarding the use of informally shared milk. This, along with resources shared below can be a starting point to have these conversations with families who are interested in the topic.

As health professionals, is also important to understand that there is a difference between milk sharing –  mothers may share  altruistically and be commerce free or there may be  an exchange of money or mothers who are paid for the milk.  When financial exchange enters the equation, mothers seeking to get paid for their milk may be motivated to dilute or alter their milk.  We should advise parents to be alert and aware of this.

Until PDHM becomes universally available, if a family does not wish to feed their infant formula, the only other option available is informally shared milk.  Having transparent and honest conversations with families to help the understand this practice is essential.

Resources for Informal Milk Sharing

The American Academy of Nursing (2016). Position statement regarding use of informally shared human milk.  Nursing Outlook, 64, 98-102.

Martino, K., & Spatz, D. L. (2014). Informal milk sharing: What nurses need to know. The American Journal of Maternal/ Child Nursing, 39(6), 369-374. doi:10.1097/NMC.0000000000000077

Spatz,  D.L. (2016.) Informal Milk Sharing. American Journal of Maternal Child Nursing;41(2):125. doi: 10.1097/NMC.0000000000000225. PubMed PMID: 26909729.

Wolfe-Roubatis, E. & Spatz, D. L. (2015). Transgender Men & Lactation: What nurses need to know. The American Journal of Maternal Child Nursing,40(1): 32-38. doi: 10.1097/NMC.0000000000000097.

Israel-Ballard, K., Donovan, R., Chantry, C., Coutsoudis, A., Sheppard, H., Sibeko, L., & Abrams, B. (2007). Flash-heat inactivation of HIV-1 in human milk: a potential method to reduce postnatal transmission in developing countries. Journal of Acquired Immune Deficiency Syndromes, 45(3), 318-323.

Diane L. Spatz, PhD, RN-BC, FAAN is a Professor of Perinatal Nursing & the Helen M. Shearer Professor of Nutrition at the University of Pennsylvania School of Nursing sharing a joint appointment as a nurse researcher and director of the lactation program at the Children’s Hospital of Philadelphia (CHOP). Dr. Spatz is also the director of CHOP’s Mothers’ Milk Bank.  Dr. Spatz is an active researcher, clinician, and educator who is internationally recognized for her work surrounding the use of human milk and breastfeeding particularly in vulnerable populations. Dr. Spatz has been PI or co-investigator on over 30 research grants, included several from the NIH.  She has authored and co-authored over 80 peer reviewed publications.  Dr. Spatz has authored or co-authored position statements for the International Lactation Consultant Association, the Association of Women’s Health Obstetric & Neonatal Nursing and the National Association of Neonatal Nurses.

In 2004, Dr. Spatz develop her 10 step model for human milk and breastfeeding in vulnerable infants.  This model has been implemented in NICUs throughout the United States and other countries worldwide. Dr. Spatz has been named a prestigious “Edge Runner” for the American Academy of Nursing related to the development and outcomes of her model.  Her nurse driven models of care are critical in improving human milk & breastfeeding outcomes and thus the health of women and children globally.

Dr. Spatz is also the recipient of numerous awards including: Research Utilization Award from Sigma Theta Tau International and from the University of Pennsylvania:  the Dean’s Award for Exemplary Professional Practice, the Expert Alumni Award and the Family and Community Department’s Academic Practice Award   She is also the recipient of the Lindback Award for Distinguished Teaching. Dr. Spatz received the Distinguished Lang Award for her impact on scholarship, policy & practice.

In the university portion of her job, she teaches an entire semester course on breastfeeding and human lactation to undergraduate nursing students and in the hospital portion of her job, she developed the Breastfeeding Resource Nurse program.  Dr. Spatz is also Chair of the American Academy of Nursing’s Expert Panel on Breastfeeding and their representative to the United States Breastfeeding Committee.  Dr. Spatz is also a member of the International Society for Researchers in Human Milk & Lactation

You’ll be fine. Don’t be selfish. This was Mā Ma’s last words to me. Even though she hadn’t been able to eat anything for days and liver cancer caused by hepatitis B had coated the insides of her abdominal cavity, I still didn’t believe it was possible that I could lose her. A year earlier, she had been diagnosed with liver cancer a week after my eighteen-year-old brother died of the same disease.

Dropping my college textbooks, I grabbed her hand and said, “I won’t be fine. Today is your wedding anniversary. In a few weeks, I turn twenty-one. There’s no way that God would take both you and Jon-Jon.”

No matter what I said, her eyes remained closed against the crisp white hospital pillow. Desperate, I said the most hurtful thing I thought I could say, “If you die, I won’t get married. I won’t have kids without you.”

Her eyes fluttered. I knew the words upset her because she once told me that becoming a mother was the best thing that ever happened in her life. An hour later, a chocolate brown bubble escaped from her mouth and she was gone.

For years, I thought that Oath was meant to punish Mā Ma for leaving me. But when I finally realized it was because I was afraid hepatitis B would claim another person I loved, I understood that I was only hurting myself.

My two daughters (11 and 3) are as feisty as my mother and my son (8) dotes upon me the way I thought only my brother could. They are free of hepatitis B because nurses like those of you who belong to AWHONN worked with me to ensure that all my kids were given the hepatitis B vaccine at birth, even though I am not chronically infected with hepatitis B. This is something that parents need to request.  I’ve spent the last 19 years since founding The Hepatitis B Initiative educating parents about how they can protect their children from hepatitis B.

Today, The Hepatitis B Initiative operates in several states preventing liver diseases caused by hepatitis B and C among Asian Americans and Pacific Islanders, African Americans and other high-risk groups. We have served Chinese, Vietnamese, Korean, Cambodian, Laotian, Thai, Filipino, Nigerian, Ethiopian, Cameroon, Sierra Leone, Indian, Pakistani, Egyptians, Sudan, Syrian, Afghanistan, Bangladesh, Indonesian, Ghanaian, Moroccan, Saudi Arabian, Brazilian, Nepalese, Burmese, Salvadorian, Guatemalan, Ecuadorian, Sri Lankan, Mexican, El Salvadorian, and Honduran communities who are not accessing health care due to a lack of affordable treatment options, employment in industries which expose workers to hepatitis (such as nail salons, health care work, etc.), language barriers, and a lack of culturally competent care.

Because we bring services directly to places where the community gathers (51 events held in 2015) like mosques, schools, churches, temples, health fairs, ESL classes, clients are willing to share the reasons why they have never heard about or been screened or vaccinated for hepatitis B.

Hepatitis B is an easily preventable disease and yet it kills 2 people every minute. In the United States, 1 in 10 Asian Americans is chronically infected with hepatitis B. It is one of the greatest health disparities.

First, most who are infected feel perfectly healthy. As many as 75% of the Americans living with hepatitis B or C do not know they are infected.

Second, even though like my family’s situation, most Asian Americans contract hepatitis B from mother to child during birth, there is a stigma that it is a sexually transmitted disease and therefore most people living with hepatitis B choose to remain silent about their condition.

• They are worried that they will lose their jobs or ruin their chance of finding a partner.
• Immigrants believe they will be deported since hepatitis B is a reportable disease.
• Many believe that it’s better not to know whether they have hepatitis B or liver cancer or cirrhosis.
• Or worse no one ever told them that hepatitis B was a serious disease.

Third, many cultures enforce silence. I’ve been told all my life not to talk about the bad stuff. Pretend everything is fine. Save face.

My mother was a photographer, journalist, and painter. She taught me that art could say the things that we are afraid to say, how it could heal long after the life of its creator. With the weight of a camera around our necks, my mother would ask as we waded through white waters or leaped onto the back of a horse: “What story are you trying to tell?” In nearly fifty national parks, my aesthetic developed in the natural world, places woven with indigenous knowledge, bled in streambeds, trapped in rock layers, eroded in the earth.

While The Hepatitis B Initiative has had a life-saving impact, I realized that the transformative power of art does more. People tell me that my story saves lives. That’s why I’m working on a memoir which I hope will inspire others to find their voice. That perhaps together we can end the silence and stigma cloaking hepatitis B and other diseases.

On October 15, 2016, the Hepatitis B Initiative will be throwing a Gala at the Willard Hotel in Washington, D.C. to celebrate 10 years as a nonprofit. For more information, please visit hbi-dc.org or contact [email protected].

Losing her mother and brother to hepatitis B at the age of twenty-one inspired her to found the Hepatitis B Initiative in 1997, which she later expanded to the Maryland, Virginia, and Washington, D.C. area with Thomas Oh. Today, this award-winning nonprofit continues to operate in several states mobilizing communities to prevent liver diseases caused by hepatitis B and C among Asian Americans and Pacific Islanders, African Americans and other high-risk groups.

Leslie Hsu Oh
[email protected]
www.lesliehsuoh.com

“If we don’t do it……it will never be done.”

The image will be forever ingrained in my memory: the remains of a miscarriage scooped up by a gloved hand in the emergency department,  tossed into a plastic specimen container and left on a counter. No condolences were offered to the woman who had experienced this loss. This memory haunts me to this day but also drives me to advocate for change.

“If we don’t do it……it will never be done.”

In the United States, 1 in 4 pregnancies ends in miscarriage. It is likely that you know of someone, or have personally experienced a loss. .  The gestational age at the time of pregnancy loss appears to determine not only the setting for care, the emergency department (ED) or labor and delivery (L&D), but also the standard of care when it comes to addressing bereavement. This difference demonstrates that miscarriage continues to be treated as a physical complaint and is not acknowledged as the loss of life with emotional dimensions.

Labor and delivery units across the country have incorporated evidence-based practice standards, educated the bedside nurses, and rewritten policy and procedures to apply the principles of perinatal bereavement care into the standard of care for women experiencing loss after 20 weeks gestation. We have done a terrific job responding to the unique emotional, spiritual and cultural needs of this population. However, there is another unique group of women who may be slipping through the cracks; women who miscarry before 20 weeks gestation and receive emergency care in our EDs.

“If we don’t do it……it will never be done.”

Historically nursing care of women experiencing a miscarriage in the ED concentrated on the medical interventions to correct hemodynamics and nursing care to promote physical recovery. The plan of care was devoid of bereavement support and the communication and activities to validate the miscarriage as the loss of life. Bereavement care acknowledges miscarriage as the loss of life and demonstrates that the products of conception need to be handled with respect and dignity. Bereavement care considers the spiritual, emotional and cultural expression of the pain that accompanies the loss of a baby.  The depth of this pain does not correlate with the duration of the pregnancy. It cannot be assumed that because it was an eight-week pregnancy, the woman will not mourn the loss. This stated we cannot conclude that all women who miscarry will cry or require perinatal bereavement support. However,  nurses must explore the personal meaning of the pregnancy loss being mindful of offering choices and accommodating individual requests.

The emergency department is fast-paced, has high nurse: patient ratios and often the standard operating procedure for the woman whose chief complaint is vaginal bleeding and not far enough along to send to L&D, is hemodynamic stabilization and discharge home.  Perinatal nurses are sometimes asked to tend to the emotional needs of a distressed woman in the ED. Although perinatal  nurses may happily accommodate the request, they may also be reluctant to leave the L&D unit and disrupt patient care there. ED and perinatal nurses working together in this regard could be viewed as collaborative but this approach can lead to fragmented care when women who are miscarrying are in need of continuity.

There are barriers to implementing perinatal bereavement care as the standard for women who miscarry in the ED. Besides time and culture, the most significant barrier is the inexperience with and knowledge of perinatal bereavement care communication skills and activities (Burkey, 2014; Chan, Chan, & Day, 2003; Evans, 2012; Rowlands & Lee, 2010; Zavotsky, Mahoney, Keller, & Eisenstein, 2013). Emergency nurses acknowledge they should provide specialized emotional care and support after a miscarriage but believe they lack the communication skills and knowledge to provide the best care (Chan et al., 2003). Fearful of saying something wrong, some ED nurses choose to remain silent, however, saying nothing may be as harmful as saying the wrong thing (Chan et al., 2003; Merrigan, 2016).

“If we don’t do it……it will never be done.”

The good news is there is a solid correlation between the comfort and ease in the delivery of perinatal bereavement support and formal education in the principles and methodologies! The ED nurse could be best prepared to meet the individual emotional, spiritual and cultural needs of these families if they had the opportunity to participate in a formal perinatal bereavement care education program (Evans, 2012). And who is better suited to lead this education but  perinatal nurses. After all, if we don’t do it, will it ever  be done?

Joyce  is a NCC certified OB RN and bereavement care coordinator. She presented perinatal bereavement care in the labor and delivery and most recently emergency room setting throughout the State of NJ. NJ MCH Consortia Perinatal Bereavement Committee and Fetal Infant Mortality Review Committee. Member of Organization of Nurse Leaders, NJ, ANA, NJNA, AWHONN, Hospice & Palliative Nurses Association (HPNA), Pregnancy Loss & Infant Death Alliance (PLIDA) and National Perinatal Association (NPA). She is currently pursuing her certification in perinatal loss (CPLC) through the Hospice & Palliative Credentialing Center (HPCC) and is also a fulltime DNP student focusing her doctoral project on the principles and methodologies of perinatal bereavement care for ED nurses with specific application to miscarriage.

References

Bereavement and Advance Care Planning Services Gundersen Lutheran Medical Foundation, Inc. (2008). RTS bereavement care training in early pregnancy loss. In M. Daley & R. Limbo (Eds.), RTS bereavement training in early pregnancy loss, stillbirth, and newborn death (7th ed.). La Crosse, Wisconsin: Bereavement and Advance Care Planning Services Gundersen Lutheran Medical Foundation, Inc.

Burkey, D. (2014). Evidence-based perinatal bereavement education for women treated for miscarriage in the preadmission testing unit: A pilot of system change. Available from ProQuest Dissertations & Thesis Global (1528574664). Retrieved from http://search.proquest.com.library.capella.edu/docview/1528574664?accountid=27965

Canadian Paediatric Society Statement. (2001). Guidelines for health care professionals supporting families experiencing perinatal loss. Paediatric Child Health, 6(7).

Carlson, R. (2012). Helping families create keepsakes when a baby dies. International Journal of Childbirth Education, 27(2), 86-91.

Chan, M., Chan, S., & Day, M. (2003). A pilot study on nurses’ attitudes towards perinatal bereavement support: A cluster analysis. Nurse Education Today, 24, 202-210.

Conry, M. J., & Phil Prinsloo, D. C. (2008). Mothers’ access to supportive hospital services after the loss of a baby through stillbirth or neonatal death. Health S. Gesonheid, 13(2), 14-24.

Evans, R. (2012). Emotional care for women who experience miscarriage. Nursing Standard, 26:42, 35-41.

Gundersen Lutheran Medical Foundation, Inc. (1984-2013). Resolve through sharing bereavement education model position paper [Position paper]. Retrieved from Gundersen Health website: http://www.gundersenhealth.org/upload/docs/Bereavement/RTS-PPA-Educational-Model.pdf

Hannah, K., & Goodall, U. (2013). Perinatal bereavement care: Are we meeting family’s needs?. British Journal of Midwifery, 21:4, 248-253.

Kobler, K., & Limbo, R. (2011). Making a case: creating a perinatal palliative care service using a perinatal bereavement program model. The Journal of Perinatal & Neonatal Nursing, 25(1), 32-41.

Merrigan, J. L. (2016). Perinatal bereavement care for women who miscarry in the emergency department. Unpublished manuscript, School of Nursing and Health Sciences, Capella University, Minneapolis, MN.

Rowlands, I., & Lee, C. (2010). ’The silence was deafening’: Social and health service support after miscarriage. Journal of Reproductive and Infant Psychology, 28(3), 274-286.

Zavotsky, K., Mahoney, K., Keller, D., & Eisenstein, R. (2013). Early pregnancy loss and bereavement in the emergency department: Staff and patient satisfaction with an early fetal bereavement program. Journal of Emergency Nursing, 39(2), 158-161.

I have worked with babies as a neonatal nurse for nearly twelve years.  In that time I have seen countless well babies, premature babies, babies with heart defects or bowel defects, and babies born with Down syndrome or syndromes incompatible with life.  I have seen babies die.  It happens and is the sad, unfortunate part of the job. It’s sad for the parents and family that longed for this little person and lost.  It’s sad for the medical team that worked so hard to give the baby a fighting chance and lost.  So how does one overcome a particularly poignant loss?

The hardest moment I endured in my career, that still haunts me from time to time, happened two years ago.  I was in the middle of a three month internship at a NICU in Gothenburg, Sweden.  It was part of a required “clinical” to prove to the Swedish Board of Health that I was a competent nurse worthy of my Swedish Nursing License.

I had worked as a NICU nurse at home in the U.S. so it was familiar territory with the huge exception of having to speak another language.  I was shadowing one of the brightest nurses in the unit.  We had an assignment as well as the delivery phone.  We were near the end of an evening shift when we heard a sound on the other side of the locked door to the NICU.  It was the sound of a woman in labor screaming out.  Only a few minutes later, the delivery phone rang.  They needed us for a repeat cesarean; the indication was failure to progress with a slight indication of fetal distress.  Any nurse who has worked as the NRP nurse knows that this was just a routine cesarean.

We went in the O.R., checked the radiant warmer, suction, bag and mask, and probably started talking about something completely unrelated to the task at hand.  After all, it was maternal indications, the baby was fine.  So we thought.

We saw the baby come out, hit the APGAR timer, and the rest is a one hour blur.  The baby was pale, limp, and completely unresponsive.  We dried and stimulated the baby according to newborn resuscitation guidelines.  Nothing.  We started ventilating the baby, hooked her up to a pulse oximetry probe, and checked a heart rate.  Her heart rate was low and she wasn’t responding to ventilation.  This was about the time I had a brief out of body experience of disbelief.  I took over ventilation so my preceptor could call the attending.  Can you imagine calling a doctor in an emergency and having to speak another language?  All the while, the baby’s father stood directly behind us in quiet observation.  The baby was intubated, ventilated, given round after round of epinephrine, given blood, given every bit of life-saving effort but sadly was pronounced dead after every possible effort was made.

I can still see her little face. Her eyes were wide open.  She had a full head of hair. She was a beautiful, healthy, full term baby that didn’t make it.  This was the hardest to come to terms with.  Premature babies are not ready, not mature, we know sometimes they fight to live and it still it isn’t enough. A full term baby, though, without any defects or complications?  They are supposed to live.

I think all present that evening were shocked.   We had a debriefing in the days that followed and it was discovered that the baby had severe meconium aspiration that occurred in utero.  I must say in retrospect I have never worked with such a calm, collected, organized and respectful group of people during a code.  Each had a job and calmly, but quickly performed it.

So what advice can I offer to others that have suffered, or may in the future suffer, the same trauma?

Time

I still feel my heart skip a beat sometimes when carrying the delivery phone and it starts ringing, but it has gotten better with time.  I take deep breaths as I make my way to the operating room or labor and delivery unit.

Talk

I talked about it to anyone that would listen.  My coworkers were sympathetic, many even offering to follow me to deliveries until I felt more confidant again.  I think it is human to need to know we are not alone and are supported.

Be Kind to Yourself

It’s easy for anyone in a code situation to second guess if they did the right thing.  Doctors do it.  Nurses do it.  At some point we have to know that we did everything we could and it would not have made any difference.

Remember

The reason I say this is that it is better to be prepared for the worst and hope for the best than the latter.

Cry

I remember my preceptor crying immediately after, me attempting to console her as I left, shocked.  It didn’t hit me until long after, over dinner with my family.  I cried in my dinner.  Nurses witness more trauma and stress in a day’s work than others in a lifetime.  We are not superhuman, not robots.

The thing is that following a traumatic event, we have to pick up and assume the role of caregiver to another patient-sometimes all in the same day.  Allow space for reflection at some point.  It is necessary.  We are only human after all.

Lori Boggan, RN
Lori is a NICU Staff Nurse at Sahlgrenska University Hospital in Gothenburg, Sweden. After becoming a nurse, Lori traveled across the country to work a three-month travel contract in San Francisco, California. Nearly five years later her journey continued to Gothenburg, Sweden, where she now lives and works.

Resources

Foreman, S. (2014), Developing a Process to Support Perinatal Nurses After a Critical Event. Nursing for Women’s Health, 18: 61–65. doi: 10.1111/1751-486X.12094

Puia, D. M., Lewis, L. and Beck, C. T. (2013), Experiences of Obstetric Nurses Who Are Present for a Perinatal Loss. Journal of Obstetric, Gynecologic, & Neonatal Nursing, 42: 321–331. doi: 10.1111/1552-6909.12040