Rebirth

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.