Rebirth

The Journey of Pregnancy After a Loss

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By Joey Miller, MSW, LCSW

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From an expert counselor, a compassionate, comprehensive guide to healing, conception, and pregnancy after loss of a baby.

The challenges of having another pregnancy after loss can be extensive from a physical/medical standpoint alone, but no more so than the emotional and psychological hurdles. Therapist and social worker Joey Miller has counseled women and their families on exactly these matters for nearly twenty years. She brings deep compassion, knowledge, and wisdom of both the emotional and physical roller coasters to help women and their partners tackle all the tough issues:
  • How to talk to your doctor
  • How to handle the emotional fallout, including dealing with your children, family members, and friends
  • Physical assessments and considerations
  • How to get the emotional support you need
  • Support for partners/spouses
  • and more
Other than personal accounts of pregnancy after loss, no other book addresses what to expect when expecting goes horribly wrong . . . and then beyond. Rebirth provides a road map for that journey. With concrete help navigating the immediate aftermath of tragedy and the difficulties re-acclimating to a very fertile world to the very mixed emotions of grieving while trying to conceive, Rebirth addresses the inconceivable with deep empathy and practical wisdom.

Excerpt

Author’s Note

THE USE OF THE WORD physician throughout this book is intended to imply any primary medical provider, whether that person is a medical doctor, an advanced practice nurse (nurse practitioner, certified nurse midwife), etc. Also, the narratives in this book are real and reflect twenty-five different women’s experiences with loss and subsequent pregnancy. The majority of women chose to use their given first names; a minority have been respectfully changed to maintain anonymity per individual request.




Foreword

AS AN OBSTETRICIAN, I HAVE the best job in the world. Witnessing the miracle of birth is something I have learned to never take for granted as pregnancy does not always work out the way it is supposed to. It is a hard and awful truth that pregnancies can develop complications, end prematurely, and in some cases babies die. And it is far more common than people perceive: a loss can occur with or without warning and at any time during all three trimesters, at delivery, or postpartum. According to the Mayo Clinic, an estimated 10 to 20 percent of pregnancies prior to twenty weeks end in loss. The Centers for Disease Control and Prevention indicates that stillbirth after twenty weeks’ gestation affects 1 in 100 pregnancies. Some are associated with birth defects or chromosomal abnormalities, such as Down syndrome, and others occur in patients with high-risk conditions, such as diabetes or hypertension; but 25 percent or more of stillbirths occur without any explanation. No matter how or when their loss occurred, all parents want to know why this happened, and it is very frustrating to tell them that medical knowledge currently cannot always answer this question. Hopefully, one day we will understand more about why some pregnancies end before full gestation and why some babies die after delivery.

I have been practicing high-risk obstetrics for over thirty years now, and with that territory comes the inevitability of caring for patients whose baby has died. The skill of breaking bad news and comforting patients was not taught in medical school, so many of us physicians have to develop it by intuition, trial and error, and watching others. Over the years, my patients have taught me most of what I now know. I have learned that most women have overwhelming guilt, which tortures them for a long time, with such recurring thoughts as “if only I had not worked so much, if only we had not had sex the night before, if only I had not fallen asleep on my back,” and so on. I also have learned that the most important thing for all women to hear is, “This was not your fault.” Losing a child is not fair, and there is never a good reason for it to happen. Making sure we convey this to women who are grieving is one of the most important parts of care. Another important part of care is discussing future pregnancies with women who have undergone a loss. It can be a difficult subject, but necessary.

Fortunately, there are counselors who are experienced in perinatal loss. These counselors provide crisis intervention, supportive counseling, and education to women who experience pregnancy and infant loss. They can also play a role in educating nurses and physicians how they may best support these patients in the aftermath of their loss. I have the highest respect for these perinatal grief counselors, who perform this difficult but incredibly valuable task day after day. Joey Miller is one of those extraordinary individuals, but her experience far exceeds years in the hospital or clinic settings where, for many women, the grief is only just beginning. A mental health professional, Joey has extensive experience supporting bereaved women and families in the weeks, months, sometimes years following their loss and as women battle trauma, depression, and anxiety. And she has provided expert guidance when those women are ready to consider the unthinkable—conceiving again. Joey is much respected for her expertise in this area; many practitioners refer their patients to her knowing that they will receive the best care and comfort possible. I have witnessed the difference Joey makes in the lives of people who are going through this difficult time, and how they come back stronger.

Joey understands the devastating nature of perinatal loss as well as its long-lasting effects. She has helped families learn to cope with the fear that comes with contemplating another pregnancy, the sadness on anniversaries of the loss, and the anxiety and panic that ensue as the patient not only approaches the point in the next pregnancy where the prior one was lost, but also until that woman gets well beyond delivery.

Joey has also been part of the joy as well as the mixed emotions that can emerge after a subsequent successful pregnancy. She assists and helps manage the realities of parenting a child after identity and confidence have been so compromised by prior loss. Joey shares all of this knowledge in this book, ensuring no woman has to go through any of this alone, and easing the journey through this dark place. By sharing her experiences and those of her patients, she extends a hand to those in need. This book is not only for women who have experienced a pregnancy or infant loss and who are conceiving again; physicians and nurses will benefit as well from reading it. Whether you are a patient or provider, my hope for you is that reading this book will bring some measure of comfort, strength, and emotional support and guidance.

Alan Peaceman, MD,

Professor and Chief, Division of Maternal Fetal Medicine, Department of Obstetrics and Gynecology, Northwestern Feinberg School of Medicine Chicago, Illinois




Introduction

My Hope for You

THE VIEW FROM MY OFFICE window is far and wide across the landscape. From where I sit, I see the road on which many travel, off into the warm and golden sunlight, cradling a new and healthy life in their arms. I also see the vast expanse of space that runs from this road all the way up to my office door. Much of that land is a graveyard, filled with remembrances of a lost pregnancy or baby, and now, the painful memories of all the hopes and dreams that were connected to that child’s life and future. The mothers and fathers of those babies will not continue on that road as expected, planned, or as desired; the path they believed and trusted would lead to parenthood. Instead, they have been thrown mercilessly from that road and abruptly learn there will be no continuing pregnancy, no baby, and no future with that child. This reality is the shocking and harsh aftermath of perinatal loss—the death of a baby during pregnancy, labor and delivery, the postpartum period, or early infancy.

For nearly twenty years, I have and continue to receive thousands of parents at my door who are gravely wounded and devastated, sometimes even feeling dead themselves after having just lost their baby. I have compassionately welcomed and worked tirelessly with them, for days, for months, and even years, to treat and care for their unbelievably complex injuries from this loss but to also help them gradually and eventually find their way back to that road.

The mere thought of starting that journey again can seem an absolute impossibility—unsafe and threatening, and filled with dread. However, from all that I have seen, I know that it is not. It is very, very difficult, but it is not impossible. The parents I meet are consumed by profound tragedy, as well as aching from the gaping wounds created by heartbreak. In my world, and from all I have seen firsthand, there is nothing, nothing, worse than losing a baby or child. Because the extent of the injuries is tremendous, my patients initially (but understandably) cannot see anything beyond the loss of their pregnancy and the death of their baby.

If you are one of those innocent and tragic victims, you already know there is absolutely nothing, not one single thing I can say that will lessen the pain of what you are experiencing. The only thing that would genuinely help is for you to still be pregnant and still have your baby. I am profoundly sorry for the reason our paths have crossed, and while I am glad you have picked up this book, I wish our connection had occurred under very different circumstances. I know you face an uncertain road ahead, but you do not have to walk it alone.

Although it may be impossible to imagine that you will ever find your way through your intense and immense grief, much less back to that road toward parenthood, I know from experience that eventually you can and will. The reason I know this is possible is that I see parents go on to find happiness and joy in their lives again, although never forgetting about their lost pregnancy or their deceased baby. I see them become empowered and find ways to return to that road, continue, and then complete their journey to parenthood and family growth. I know because this is my professional life’s work. I consider it a privilege to partner with women and their families on this journey, and am always touched when contacted with news of the healthy delivery of a subsequent baby. We joyously celebrate that new life, and we also remember and cherish the baby (or babies) who came before.

Over the years, I have learned so much more than I have taught, and I have my patients to thank for that. I have learned all the things that were not helpful for parents, and many of the things that were. I learned how to sit and listen to the aching and raw emotion of the loss. I learned how to help parents sort it, process it, and understand it. I learned how to care for wounds before scar tissue begins to form. I learned how to teach parents to find ways to carry their deceased baby in their hearts, honoring and remembering him or her. I learned how to help parents confront their worst fears and work through them and then beyond them.

As inconceivable as it seems, I also learned how to help them find their way back to that terrifying and uncertain road, identify another entry point, and resume their journey. I learned how to help parents pace themselves through the days and weeks and months and years ahead, advising them of the inevitable sharp curves before them so they will not be blindsided or feel as unprepared again. Over the years, I learned more and more, and eventually, I found a way to help turn thousands of parents’ grief into something beautiful and meaningful. I used all that I learned to create a road map so that people like you wouldn’t have to feel so lost, so afraid, and so very alone. It is my hope and intention that this book will guide and support you through that process.

Through the years, I have counseled thousands of incredibly brave women who first came to my office, seeking solace after a tragedy. Twenty-five of these women—women who lost a pregnancy or baby and went on to confront their deepest fears by considering and then embarking on a subsequent pregnancy—have graciously agreed to publicly share parts of their experiences to raise awareness, educate others, provide support and guidance, and most important, to encourage hope. Each woman’s path is highly individual and reflects the intensely personal nature of grief, depression, anxiety, fear, and trauma. Many have decided to use their real first names; a number have chosen to remain anonymous. Their narratives, interlaced between the concrete guidance presented, recount how their lives are changed forever by loss, and they also provide striking evidence that there is life beyond loss. Their words capture moments of desperation and hopelessness, the agony of uncertainty, and the growing pains critical to their own rebirth.

The book you hold, Rebirth, reveals how these women found—and now how you can find—your way back to that road: from the point of unimaginable grief and tragedy, to better understanding and processing of your emotions, to exploring time-sensitive choices ahead of you as you consider the daunting and overwhelming task of trying again. Further, this book will guide you through every step of your next pregnancy, and help empower you to eventually embrace that new and growing life, as well as your life and yourself after the loss.

No matter where you’re currently at in your journey—whether your loss just occurred, or whether you’re subsequently pregnant—you, your partner, and your medical providers can all benefit from this book. The chapters will guide you every step of the way through the process from the decision to try again and what may unfold for you emotionally as you move through three trimesters, delivery, and then eventually postpartum. By starting at the beginning, you will gain a deeper perspective of the challenges you’ve already faced or are currently facing, which will inevitably help with those ahead. The insight offered will undoubtedly improve your sightlines—and thus confidence—as you continue to make decisions long into your future.

Still, it’s normal to have doubts; you will continue to have many fears; for a time, you may have lost hope—that’s all to be expected given what you have been through. Walking by faith is considerably more difficult than walking by sight. What matters now is that you’re no longer alone in the dark, without anyone who speaks the same language as you in the place of raw grief. Please know I have a light and I know the way well. I will walk as slowly and cautiously as you need, but I will also walk confidently. And, we can walk together.




1

Facing the Aftermath of Tragedy

Totally Unprepared

In your chest of drawers,

Your clothes were clean

Your diapers awaiting use

Your blankets were warm and ready

Your dad put on the finishing touches

assembling the bassinet and stroller,

safety seat in the car.

Your toys were ready to be played with

Your books were waiting to be read

The rocking chair stood idle as it waited

We waited with great anticipation.

We were prepared.

Yet we could not know what that day would hold

the shock

the horror of silence

We could not prepare

our hearts

to be shattered

We were caught totally unprepared.

Totally unprepared for the pain of losing you

Totally unprepared for the travail of delivering you

Totally unprepared for the look of loss in your father’s eyes

in my eyes

in the eyes of grandma and grandpa and nana.

Totally unprepared to let you go.

BRITTANY

PREGNANCY IS SUPPOSED TO BE a happy, exciting, and joyful experience. Even the actual words used to express the news—“I’m expecting”—denote that a healthy, full-term delivery is anticipated. Unfortunately, even if you were able to conceive spontaneously and straightforwardly, the happily-ever-after is abruptly and dramatically interrupted when the miracle of pregnancy is transformed into the nightmare of loss. You’re left facing not only the physical loss of this much-desired pregnancy and baby, but also the loss of the expected future, as well as loss of control, loss of time, loss of clarity, loss of confidence, and loss of identity. You were expecting to be a mother. The complete story is not supposed to end this way.

Sadly, babies can and sometimes do die during all three trimesters of pregnancy, during labor and delivery, the postpartum period, and early infancy. In 2010 (most current data available), there were an estimated 6.2 million pregnancies conceived in the United States. Of this total, 4 million had a live birth outcome.1 In the United States in 2018, there were 3.8 million live births reported, a number relatively unchanged.2 These statistics suggest that approximately 2.2 million pregnancies annually end in loss in the United States. For further reference, in the United States:

• An estimated 10 to 20% of known pregnancies end in miscarriage (loss prior to 20 weeks’ gestation). That risk increases with age. At age 40, the risk is about 40%; at age 45, it is 80%. And, approximately 50% of miscarriages are associated with a chromosomal abnormality.3

• 1 in 100 pregnancies end in stillbirth (loss after 20 weeks’ gestation); this is about 24,000 deaths annually.4

• There are an additional 22,000 infant deaths a year (death of a child less than 1 year of age).5

• 1 in 10 babies is born preterm (prior to 37 weeks’ gestation).6

• Congenital malformations, preterm birth and low birth weight, maternal pregnancy complications, and sudden infant death syndrome (SIDS) are the leading causes of infant mortality in the United States.7

The numbers further explode when viewed internationally:

• According to the World Health Organization (WHO), there are over 6.3 million perinatal deaths a year worldwide. Of these, 2.64 million are stillbirths, and 3.0 million are early neonatal deaths (loss occurring within the first month of life).8

• In 2017, the WHO reported there were 4.1 million infant deaths worldwide (death of a child less than 1 year of age).9

Although many advances have been made to enhance and improve perinatal care, these losses can occur with or without warning, and with a staggering frequency. They can occur due to complications of placenta, cord, or membranes; infection and injury; chromosomal and congenital anomalies (that have a genetic, environmental, or unknown cause); or due to other maternal health issues. Independent of how or when they occur, they all represent an extraordinary disruption in the path a pregnant woman was expecting to pursue for herself, her family, and her life. When that happens, she, and in this case you, are caught totally unprepared.

EMOTIONAL FREE FALL

Everyone who has lost a pregnancy or baby quickly learns you don’t hit rock bottom immediately. The shock of loss can feel devastating, but initially, there are distractions, and decisions to be made (for example, “What happens next?” “Will I need medication, a surgical procedure, or to go through delivery?” “What will happen to the baby’s body?”). The shock is accompanied by feelings of profound disappointment, sadness, loneliness, anger, jealousy, helplessness, and hopelessness.

You may also struggle with anxiety, finding it challenging to manage feelings of worry, fear, uncertainty, an admitted lack of control, and an unknown future. You may wonder whether you will ever be able to see through this unimaginable weight of grief. Your frame of reference is now loss. It doesn’t matter that the majority of women have healthy pregnancies and deliveries; you did not.

The emerging reality is, you have been cheated out of a healthy, happy pregnancy, an exciting and joyful delivery, and the experience of raising this baby in early infancy. You have learned firsthand that cruel and ironic twists of fate can occur. Optimistic expectations can be shattered, and bad outcomes are a real possibility, not only something that happens to someone else. Then, it gets worse.

Confusion and chaos begin to set in. You grow dizzy and disoriented, trying hard to make sense of something that doesn’t make any sense at all. The world you once knew, believed in, and counted on has changed dramatically. This is where the questions begin, and they often do not stop.

“Why (and how) did this happen?”

“Why now?”

“Why me, why us?”

“Why this pregnancy, this baby?”

“What did I do wrong?”

“Why wasn’t this prevented?”

“How could I not have known?”

“Why couldn’t I protect him/her?”

This is also where the feelings of guilt begin. Some women are eventually provided with answers as to the probable cause of their loss, but many more are left with unanswered questions they are forced to carry the rest of their lives. In the absence of a clear etiology, women often begin to question and then blame themselves. The reality is that you didn’t do anything to cause your loss. There is nothing you did, didn’t do, or could have done differently to prevent it. As you will continue to learn, the loss of pregnancy and the death of a baby are not discretionary; it can happen to anyone. It just happened to you. You who were prepared and waiting, wanting, and very willing to bring a baby into this world. It’s a hard and harsh landing when you are forced to reenter that world, no longer pregnant, and without your baby. This is when you might truly hit rock bottom—in the days and weeks and months following your loss, and as the wake of tragedy widens.

MARNEY

Our loss of our daughter occurred the night/early morning before our scheduled C-section. I couldn’t sleep and went out to the couch to lie down. I remember feeling her kick and never thinking anything was wrong. I was so nervous about the surgery and making sure that my son was taken care of before we left, that I never realized I didn’t feel her move that morning. When the nurse could not find her heartbeat on the monitor, I guided her to where I knew she was. It never even crossed my mind that anything was wrong… we were in such shock. There was absolute silence: in our room, in our hearts, in our hopes for the future. We had no idea what had hit us…

DEPRESSION, PTSD, AND LOSS

Depressive feelings are common and expected following the loss of a pregnancy or the death of a baby. However, the signs and symptoms of grief can look identical to those of clinical depression. According to the American Psychiatric Association,10 criteria for clinical depression include at least five of the following symptoms that are experienced every day or nearly every day for a period of two weeks:

• Depressed mood

• Markedly diminished interest or pleasure in all or almost all activities

• Significant weight change (loss or gain) or appetite disturbance

• Insomnia or hypersomnia

• Psychomotor agitation or retardation

• Fatigue or loss of energy

• Feelings of worthlessness, or excessive or inappropriate guilt

• Diminished ability to think or concentrate; indecisiveness

• Recurrent thoughts of death, suicidal ideation

It’s easy to see how a bereaved individual might experience these same symptoms. Initially, it is impossible to tease out whether your symptoms are based in grief, or reflective of clinical depression. Consulting with an experienced mental health provider who is well versed in grief/loss can help identify (and then treat) more severe reactions and provide support through the continued grief process. That person can also facilitate a referral to explore the possibility of medication for additional support if indicated.

Genre:

  • "I have worked with Joey Miller as both an obstetrician working in Chicago and as a patient myself. It was because of Joey that I was able to return to delivering babies in the very hospital I lost my own. I know [this book] will help women who are grieving as well as the health professionals who grieve alongside them but often struggle with how best to support their patients emotionally."—Gwyneth Bryant, MD, Obstetrician/Gynecologist, Prentice Women's Hospital, Chicago, and Clinical Instructor of Obstetrics and Gynecology Northwestern Feinberg School of Medicine
  • "I have worked with Joey Miller for over a decade, and in that time, I have seen the benefits that women and their partners accrue by being in her care.[She will] make a valuable contribution to the many individuals (patients, families, care providers) who may never have the chance to work with her on a personal basis."—William Grobman, MD, MBA, Northwestern Memorial Hospital, and Professor of Obstetrics and Gynecology and Preventative Medicine, NorthwesternFeinberg School of Medicine, Chicago
  • "Joey Miller is Chicago's 'go-to source for perinatal loss counseling. Ms. Miller has tremendous depth of experience with patients whose grief originates within a variety of different contexts. My endorsement reflects the clinical experience of years of patients who have benefitted from her care in the most trying of circumstances. I trust her advice, respect her insight and am glad that she wishes to share her knowledge with a broader audience."—CassingHammond, MD, Director, Section and Fellowship in Family Planning, AssociateProfessor of Obstetrics and Gynecology, Northwestern Feinberg School ofMedicine, Chicago
  • "Joey Miller is an exceptional clinician and therapist. She has expert diagnostic acumen accompanied by unparalleled compassion and fortitude that allow her to walk with her patients in times of profound loss, horrific tragedy and immeasurable threats to themselves and those they love. Her capacity to hold patients in a loving and safe space while also holding them accountable to their own aspirations and goals is inspiring. I am profoundly grateful to be able to learn from her and work with her in the care of individuals who are suffering."—ElizabethKieff, MD, Psychiatrist, Private Practice, formerly Student Affairs Dean,Faculty Member, and University Student Mental Health Psychiatrist, Departmentof Psychiatry, The University of Chicago, Chicago
  • "Joey Miller is a locally and nationally recognized expert and respected advocate, therapeutic practitioner, and incredibly regarded presenter in the area of perinatal loss. Much of her professional career also includes educating as well as supporting the physicians, nurses, and support staff that care for these patients and families. "—Susan Rizzato, LCSW, MSW, Perinatal Loss Program Coordinator,Northwestern Memorial Hospital, Chicago
  • "Joey Miller is a very competent and highly skilled clinician who joins her clients and their stories of loss, suffering, and adversity in empathic and compassionate ways. She connects with clients while building resiliency and hope for their futures. Joey is highly regarded among colleagues and clients and their families who continue to seek her out not only during vulnerable times in their lives but also in their journey of remembering, meaning making, and resiliency."
    DenadaHoxha, PhD, psychologist, private practice, and professor, Loyola University,Chicago
  • "Joey Miller is brilliant in her vocation and seeks to bring healing and peace to all who seek her comfort and guidance. This tremendous book flows from years of experience - action put into words. Joey Miller is an angel of hope in the midst of the pain and tragedies of life."—VeryRev. Gregory Sakowicz, rector, HolyName Cathedral Parish, Chicago

On Sale
Oct 13, 2020
Page Count
288 pages
Publisher
Hachette Go
ISBN-13
9780306846625

Joey Miller, MSW, LCSW

About the Author

Joey Miller, MSW, LCSW, is a therapist and social worker who has counseled women and their families for eighteen years. She was the Perinatal Loss Program Coordinator at Prentice Women’s Hospital of Northwestern Memorial Hospital, the largest birthing center in the state of Illinois and the Midwest (and one of the largest in the country, supporting up to 13,600 births per year); she has a private practice at Wellsprings Health Associates in Chicago. In addition to individual clients, Joey also trains healthcare providers, and she remains affiliated with Northwestern Feinberg School of Medicine, where she has served as a faculty member.

Learn more about this author