INTRODUCTION — This topic was written by an individual who experienced pregnancy loss. It is intended to offer clinicians insight into the experience from that individual's point of view. This description of a particular individual's experience is not intended to be comprehensive or to provide recommendations regarding diagnosis, treatment, and/or medication information. It is not intended to be medical advice or a substitute for the medical advice, diagnosis, or treatment of a health care provider based on the health care provider's examination and assessment of a patient's specific and unique circumstances.
For related clinical topics, please see:
In this topic, we will use the terms "woman/en" or "patient(s)" as used by the author. However, we encourage the reader to consider the specific counseling and treatment needs of transgender and gender-diverse individuals. We also recognize that pregnancy loss occurs at a range of gestational ages. While this story is about loss that occurred at approximately 20 weeks of gestation, the messages apply to pregnant individuals of most gestational ages.
MY STORY — My husband and I have experienced four pregnancy losses, including two second trimester losses and two first trimester losses. I will focus on our first loss here.
Diagnosis — We found out about our first pregnancy loss when we were at our 20-week fetal anatomy scan.
●The ultrasound technician left the room, telling us that something was wrong with the connection for the ultrasound machine. She was gone too long. We knew something was wrong: "What did she say?" I asked my husband. "Don't worry," he said, "she said she'd be right back." We sat in silence. I asked my husband, "Maybe go see if anyone is in the hallway?" My husband returned and said, "They said he'll be right in." Silence. But the ultrasound technician was a woman. "Who's he?"
●One of the Maternal Fetal Medicine (MFM) attendings whom I had met before walked in. I asked why he was there, and he replied that he couldn't answer until he looked at the ultrasound. He asked for my consent for a medical student to be in the room. "That's fine, but what's going on?" He let me know that he didn't want to explain until he looked with the ultrasound himself.
●After he looked for my baby's heartbeat and could not find one, he announced what we already knew. I remember saying, "I can take this, I'm an adult. But what am I going to tell our daughter?"
By this time, everyone knew I was pregnant. We had already chosen a name for our daughter. As a hopeful expectant mother, I had already envisioned her life and dancing at her wedding.
Management — While nothing could be done to lessen our pain in the moments that followed, we were fortunate to work with a group of obstetrician-gynecologist (Ob/Gyn) physicians who helped us through the next steps. These physicians are experienced with managing losses and are well-connected with each other. The MFM physician who identified the pregnancy loss had already contacted one of the other physicians. We were expected upstairs immediately to discuss our management options. We were asked to leave through the back door of the clinic.
The physician upstairs was clear in describing our options and what we should expect. He had a warmth and understanding that was beyond what I may have expected. He did not appear rushed and seemed genuinely sad for our loss. He let me know that while what my body would be going through would be difficult physically, the emotional reaction may be even more difficult and would likely last beyond my physical recovery. He let me know that other people would not know how to react and would probably say the wrong things. He suggested that I seek support from a mental health professional to help with my emotional recovery.
After speaking with him at length, we chose to have a dilation and evacuation (D&E).
I appreciated that he spoke with us about our treatment options and planning before proceeding to a physical exam. He did an exam to insert medication to soften my cervix. He let us know we would be scheduled for his first case the next day.
Postprocedure emotions — I woke up despondent the morning after my D&E. My belly was so much smaller; I was unprepared to see my body change so quickly.
In the days that followed, I found myself walking around with a sensation that I was invisible, like a ghost. I am a psychiatrist and trauma specialist, and I know that my reaction was consistent with an acute trauma reaction that included mild dissociation (in this case, depersonalization). Depersonalization is the sensation that you're an outside observer of yourself. Derealization is a related phenomenon in which you feel that the world isn't real or that you're living in a dream. Both are common in the acute aftermath of trauma. I felt this way consistently for several weeks, and then intermittently for months afterwards.
WHAT WAS DONE WELL
At the time of diagnosis
●Immediate follow-up care – An appointment to discuss management options was set up immediately upon learning of our pregnancy loss.
●Treatment options – We were given treatment options. Our physician was one of the few who perform dilation and evacuation (D&E) for late pregnancy losses. For me, it would have been difficult to have only one option, particularly if that option had been induction of labor and delivery. We selected a D&E procedure and left the office knowing the surgery would happen the next day.
●Procedure timing and surgeon access – The physician who did my D&E scheduled me for the first case the next morning. The same physician gave me his cell phone number in case I had questions. I took him up on this offer, and he answered quickly. I felt seen and cared for.
●Mental health care – I was offered information for psychiatric or other postpartum mental health assistance on the same day we found out about the pregnancy loss.
●Follow-up from primary clinician – My obstetrician called my cell phone right away. It was so fast that I was actually in the office with the other obstetrician-gynecologist (Ob/Gyn) who was setting me up for surgery. I know that Ob/Gyns deal with so much loss and they have to develop ways to manage repetitive grief. I can imagine why an obstetrician may not have the time or space to reach out to all of their patients when emergencies happen. But hearing from my obstetrician immediately was so meaningful. Please do this. Don't take for granted how much two minutes of your time can impact your patients.
●Evaluation for cause of loss – We were told that some testing would be done to help identify the cause of the pregnancy loss, but that most pregnancy losses are idiopathic and we may not find an answer.
At the time of procedure — My procedure was scheduled for the day after the diagnosis. As it was the first one of the day, there was virtually nobody else in pre-op and I did not have extra eyes on me in a vulnerable moment. I recommend that this be done whenever possible; it made a big difference for me.
Other care points
●We were given information about the potential for future pregnancies and that many women with pregnancy loss go on to deliver healthy babies. It was helpful to have some hope at a time of extreme grief.
●I appreciate the transition in language from miscarriage to pregnancy loss. The prefix "mis" is defined as "badly" or "wrongly." The language we use is key to how our subconscious mind processes emotions. Please don't leave me feeling that I badly or wrongly carried my baby.
●Clinicians should understand local requirements regarding disposition of fetal remains. In addition to hospital or state requirements, some private funeral homes offer specific care for families dealing with pregnancy loss. It can be difficult for patients to research and figure this out themselves.
●My follow-up gynecology visits were not rushed and I was fully clothed when I met with my doctor. My gynecologist gave me the time to discuss how I was feeling emotionally and listened to how we were processing our loss. She offered me a workup for common reasons for pregnancy loss and discussed medical information about likelihood of subsequent successful pregnancies compared with pregnancy losses.
AREAS FOR IMPROVEMENT
●Lack of direct and honest communication – The time we spent waiting from when the ultrasound technician left the room until the Maternal Fetal Medicine (MFM) physician returned was excruciating. She told us that she was leaving because something was wrong with uploading images. We were concerned within a few minutes that she was lying and this was an excuse to leave the room. This worry was confirmed when my husband was told "he" was coming into the room soon rather than "she" (the technician was female). It was disappointing to be lied to in such a frightening moment. She could have been truthful and told us that she needed to get the physician for a consultation. I understand that the ultrasound technician could not tell us her primary concern given limitations in training. I encourage all obstetrician-gynecologist (Ob/Gyn) offices to have a plan for what nonphysicians should tell patients if they are the first to discover that a pregnancy loss may have occurred.
●Lack of explanation for exit route – Being asked to leave through the back door was difficult the first time it happened. From my perspective, it appeared they didn't want my tears to scare other patients. Without the explanation that this approach is often taken to avoid adding stress created by walking through a room of visibly pregnant individuals, it felt like we were being hidden in shame. This has become an inside joke in our house: "Should we leave through the back door?" Like most such jokes, it still stings. Being offered a different exit route, with an explanation of the rationale, would have created a better experience. With my most recent loss, I appreciated the option to have an exit route with more privacy.
●Limited mental health resources – In addition to the grief resources that were offered, it would have been helpful to receive information on acute grief and the range of emotions that women commonly experience with pregnancy loss. I think that a short discussion and perhaps a handout explaining that acute loss may include strong emotions but may also include significant emotional numbing would be helpful for normalization (ie, feeling emotionally normal).
●Erroneous automated system reminders – A few months after one of my pregnancy losses, I received an email update about my expected delivery. This was so painful to read. I encourage a fail-safe to ensure that patients with pregnancy loss are removed from any automated systems that track pregnant patients.
ADVICE FOR CLINICIANS
●Ask the patient to guide you – It is hard for you to know how a patient will feel about the experience of pregnancy loss. Some will want information about treatment options and future pregnancy all at once while others need to hear this information over several visits. Ask the patient to tell you what makes sense for them in that moment.
As an example, one of the first things said to me was, "Sometimes women think this is their fault. This wasn't your fault." This phrase may work for many patients and I understand why it was said. But, for me, having this phrase stated so soon after learning of our pregnancy loss led me to ruminate on this statement. I hadn't thought it was my fault until I heard those words, and then became convinced that it must, in fact, be my fault. I would have preferred being asked if I had concerns about any activities or emotions that I thought might be related to the pregnancy loss rather than having the clinician assume this was an issue at that moment.
●Discuss what to expect
•Hormones – Tell the patient to expect hormonal changes, which will impact their body and their ability to regulate their emotions.
•Body shape – Explain that their abdomen may look different after passage of a pregnancy, and this may be hard to endure.
•Milk supply – Explain that depending on the stage of pregnancy, the breasts may become engorged with milk. Provide guidance on what the patient can expect and on reducing discomfort.
•Possible complications – Explain the possibility of infection and other less common complications. Tell the patient what physical signs and symptoms are normal and what signs and symptoms should prompt them to call their provider. Encourage them to call whenever they are concerned that something is not right.
●Provide resources for support – Pregnancy loss is more common than most people know. Some patients find it helpful to discuss the experience of pregnancy loss with others who have experienced it. Inform patients that both online and in-person support groups are available. Providing resources for support applies to the entire family as pregnancy loss often impacts more than just the pregnant individual.
●Alleviate guilt – Many, but not all, patients express concern that an activity, action, or emotion contributed to, or caused the loss. If the patient is experiencing guilt, provide reassurance that these concerns are common but there is likely nothing they did that contributed to the loss. Routine activities, exercise, and stress do not cause pregnancy loss. I was worried for months that I had caused my pregnancy loss because I turned onto my abdomen while sleeping or because I had gone hiking. There were endless reasons that I found to blame myself. I still struggle with accepting that the loss was not my fault.
ADVICE FOR PATIENTS
•It is helpful to intentionally set aside time that you use to think about or "process" what has happened. This can be time spent with a professional in psychotherapy or grief counseling, time spent with friends, time spent alone, or a combination of these things.
•There is no right way to do this. It is okay if you don't feel sad when you're "supposed" to.
•Expect grief to come in waves. You may feel well one day and terrible the next. Both are normal.
•It can be difficult to be happy for other pregnant women. Seeing other successful pregnancies made me wonder again what I had done wrong.
●If you have other children – Discussing pregnancy loss with children who knew that a baby was coming can be difficult. Any discussion about death with a child will vary by age and that child's developmental stage; there is no single right way. Expect the question to come up again and again. Children are aware of more than we often give them credit for and as they age, they will remember and process the event in new ways.
•We told our toddler: "Sometimes we don't get to meet babies outside of their Mama's belly. We won't get to meet this baby. I'm feeling sad."
•For older children, using direct language about death may be more appropriate.
●Support – Accept help if it's offered. If you're in a situation where you don't have any support, ask your physician for local community resources. There may be help with food, someone to watch other children, or someone to help with grief.
Many people want to offer help but won't know what to say or do; it is okay for you to ask for what you need. Things that I found most helpful included providing meals, watching our child, and calling or texting me to check in. Many people do not realize that the grief with pregnancy loss occurs over an extended period and that the time around the expected due date may be particularly difficult. I felt really helped by friends who remembered when I was due and checked on me then.
●Time to heal – If possible, take time from work to physically heal and give some space from work for your emotional experience. The amount of time you need varies by person, gestational age of loss, treatment approach, and other medical factors. I found in my most recent pregnancy loss that I needed a month before I was able to return to work.
My partner and I did not heal at the same pace, particularly since healing was so bumpy for us both. It was most helpful to keep checking on each other, such as by asking "How are you today?," helping each other with the bad days when one of us was having a better day, and finding outside support when we were both having bad days. We needed to remember to be forgiving and understanding when one of us was short-tempered because that so commonly reflects grief.
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