Six months ago, I became a HuffPost blogger with my very first post, a piece I clunkily titled "Pregnancy Loss and the Medical Profession: A Parent's Perspective."
In the half-year since that post I have heard from dozens of other parents affected by pregnancy loss, and am more convinced than ever of the value of our voices in helping the professionals who care for us gain insight into our experiences and continue their challenging work of providing care to couples at a most painful time.
For Pregnancy and Infant Loss Awareness Month, I would like to again share this piece in the hopes that (with a better title!) it might reach more medical professionals with insights about how they can support grieving parents.
There were many reminders when I went for my routine gynecological check-up that morning. The waiting room where I had looked up baby names on my cellphone, trying to find the perfect middle name to go with the first name we had selected. The fetal monitoring room where the medical assistant had searched for my baby's heartbeat, trying to look nonchalant as the minutes ticked by without success. The office where I had waited anxiously for my husband to arrive and learn the sad news that our son had died in utero at 31 weeks gestation.
I sat there that morning seven months later, my womb conspicuously empty, trying to avoid looking at the faces of mommies-to-be smiling up from the covers of pregnancy magazines, taking deep breaths to avoid becoming overwhelmed by the cascade of memories and emotions flooding back.
I decided to text with the other moms from my pregnancy loss support group, knowing that they would understand and help me through. I was still holding my cellphone when Dr. P., the physician who had delivered my stillborn son, walked into the room.
"Do you have pictures?" he asked, smiling warmly and gesturing at the cellphone in my hand. I looked at him quizzically, unsure if I had heard him correctly -- giving him an opportunity to take his foot out of his mouth, if I had. No luck. "Do you have pictures of the baby?" he repeated, his tone was avuncular; he was clearly oblivious to who I was or his mistake.
"He... was... stillborn," I said slowly, my mouth feeling like cotton. Recognition spread over Dr. P's face. An immediate apology was quickly followed by offer of a referral to another gynecologist. The appointment proceeded awkwardly from there. I'm not sure who felt worse or who was comforting whom.
When I have shared this story with friends and acquaintances, many have had harsh words for Dr. P -- some calling him a jerk or worse. While I am frustrated by his inept handling of my visit, I don't think it's fair to ascribe Dr. P's behavior that day to a character flaw.
I believe that most people who go into the medical field do so out of a compassionate desire to help, fix and make better -- and Dr. P is no different. But in medicine, as in life, the universe has a way of confronting us with our own helplessness and powerlessness, at times.
Few situations highlight our inability to fix and make better more starkly than the loss of a baby. Medical professionals treating a family affected by miscarriage or stillbirth are faced not only with the inability to fix or heal the baby who has died, but also uncertainty about how to respond to the grieving parents.
As a parent who has been through two miscarriages and a stillbirth, I have had the opportunity to experience medical professionals' responses to pregnancy loss first hand. Some were comforting and validating. Others -- like Dr. P's -- have been clumsy, hurtful, or off-putting. While I believe that each of the medical professionals described herein were good actors who wanted to provide comfort and care, some lacked the tools to do so, or were hindered by their own reactions to inexplicable loss. Below are some thoughts, grounded in my personal experiences, that I hope medical professionals will consider when treating families affected by pregnancy loss:
Remember: What could be a routine part of your work day may be one of the worst moments of our lives. At the D&C after my first miscarriage, one of the last things I heard before falling asleep under the anesthesia was the sound of my doctor complaining gracelessly about the temperature in the procedure room. The first thing I heard upon waking up was the sound of two medical assistants arguing. While it is normal for day-to-day conversations and interactions to play out in the work place, it is also important to be respectful of the grieving parent and foster a supportive environment when providing medical care.
It means a lot to know that our loss matters. I will never forget the reproductive endocrinologist who took the time to call me personally and offer condolences after our first miscarriage. It sent the comforting message that our baby and our loss mattered and were worthy of his time.
In each of our losses, subtle messages from the medical staff validated or invalidated the importance of our baby and our loss. There was the doctor who met us at the hospital for the sonogram that confirmed our son's death in utero at 31 weeks pregnancy (even though there was another doctor present) and sat with us as we cried. Her responsiveness was juxtaposed with the doctor and resident who seemed in no rush to come to my bedside when I was in active labor, leaving me scared, confused and in pain through the first two-thirds of the delivery and wondering if I mattered less because my baby was dead.
Be mindful that there is a fine line between normalizing the commonality of pregnancy loss and minimizing our experience. While it can be helpful to communicate that pregnancy loss, particularly first trimester miscarriage, is more common than we may realize, it is important to convey that this does not take away from the trauma and pain of our own loss. Just as we wouldn't minimize the grief experienced by a middle-aged adult whose parent died by saying, "You know, it is very common for middle-aged adults to lose a parent," we should avoid minimizing the pain of someone who has experienced early pregnancy loss.
Realize that shock and adrenaline may protect us in the first days, with deeper emotions setting in as shock fades and hormones plummet. I recall seeing my doctor five days after my first miscarriage, confident that I was coping well. A few days later, reality set in, hormones shifted, and I found myself highly anxious and depressed. Doctors should consider checking in with women several of weeks after a pregnancy loss and screen for postpartum depression, rather than basing their assessment of our mental and emotional wellbeing solely on the hours and days immediately after a loss.
Consider ways to ease the stress of follow up medical visits. As the opening story illustrates, medical visits can raise many strong emotions for women who have experienced pregnancy loss. Medical practices should consider steps to make these appointments less emotionally taxing, for example not making us sit in the waiting room with pregnant women and flagging our charts so we are not asked inappropriate questions. While I would like to think that my experience with Dr. P was an anomaly, unfortunately I know other women who have faced similar questions after a loss.
If we become pregnant again, don't minimize or mock our fears of another loss in an attempt to alleviate our anxiety (or your own discomfort with our anxiety). I'll never forget the doctor who -- after my first miscarriage -- mocked my fears in my next pregnancy, pointing to my engorged breasts and saying, "they don't stand up on their own like that if you're not pregnant." Just moments later, he had the unfortunate task of diagnosing my second miscarriage.
Inexplicably, that same doctor couldn't resist the urge to poke fun again when I saw him 12 weeks pregnant a year later. First, he mocked my husband for not wanting to look at the sonogram screen until a heartbeat was confirmed, whispering to me that we shouldn't tell him that we saw the heartbeat because he hadn't had the faith to look. Later, he responded to our nervous questions by saying he would "laugh my ass off" when this child was a rebellious teenager. Far from being comforting his response was off-putting and invalidating of our fears. Unfortunately, his cocky reassurance was also misplaced. Our son was stillborn.
Rather than try to talk parents out of how we are feeling, recognize that fear of loss is part of our reality and support us as we try to live with it.
Know that your care matters, even when there is a sad outcome. While my story may not have a happy ending, it does have heroes: the physician's assistant who stayed late on a Sunday to make sure I got progesterone for a pregnancy in jeopardy; the receptionist who found a private office where we could wait for the sonogram that confirmed our son's loss; the nurse who coached and comforted me through the delivery while we waited for the doctor to arrive. Through their actions, these professionals conveyed the message: you matter and your baby matters. That, after all, is what every patient -- and every parent -- wants to hear.