Category: Grief and Loss

Lessening the Risk of Birth Trauma

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By Karin Beschen, LMHC

 “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 (3rd or 4th 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.

 

 

 

When a Baby Dies

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by Debbie Haine Vijayvergiya
Stillbirth Parent Advocate • Founding Member of The Action for Stillbirth Awareness and Prevention Coalition • Founder of the 2 Degrees Foundation Fund

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:

Additional Resource Lists

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.

Informal Milk Sharing in the United States

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by, Diane L. Spatz, PhD, RN-BC, FAAN

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 SpatzDiane 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

 

What You Need to Know About Hepatitis B

by, Leslie Hsu Oh

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

Perinatal Nurses Advocating for Bereavement Care for Women who Miscarry in the Emergency Department

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by, Joyce Merrigan, RN

“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. Continue reading →

Dealing with the Loss of a Tiny Patient

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By Lori Boggan, RN

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? Continue reading →