The journal Narrative Inquiry in Bioethics recently published an issue focused on how people are affected by pregnancy loss. I’m grateful to say my story was one of those chosen for publication.
I’ve talked about my experiences with miscarriage in blog posts before (especially Our cultural gaslighting of women who miscarry before 20 weeks and Getting an ultrasound the morning the Texas Heartbeat Law went into effect). But in this essay I focused more specifically on the role of medical professionals in improving or worsening what for many can be an emotional crisis. Here is the final manuscript I submitted, reprinted with permission:
Helping Loss Parents Heal After Miscarriage: The Critical Role of Medical Professionals
I have lost two children early in pregnancy: Scout and Hank. These losses took a significant emotional toll on my husband and me, and our experiences were worsened by well-intentioned but ill-equipped, uninformed professionals. I hope the medical community can learn from my experiences to better support other loss parents.
In early 2019, when pregnant with my third child, I opted to get the 13-week ultrasound, a non-routine test to detect potential genetic anomalies. During the test, the technician asked if I was aware I had a twin pregnancy. I was not. My OB had told me this was a singleton pregnancy. The technician explained that there had been a twin who passed away, probably around the 6-week mark, and that my body would reabsorb the remains of the twin. Shocked and uncertain, I calmly asked her to elaborate, and she detailed the signs that there had been a twin rather than a blighted ovum or placenta outgrowth. She mentioned she was willing to give these details because I seemed “very reasonable,” unlike moms in the same situation who “really freak out.”
I was surprised at the intensity of my grief. If I hadn’t opted for the 13-week ultrasound, my husband and I would have never known this child existed. As it was, we didn’t learn the child existed until weeks after he or she had died. Nevertheless, my grief was sharp and painful.
I found myself craving ritual and acknowledgment but not knowing how to fill those needs. We chose a unisex name: Scout. I bought an engraved memory box, but I didn’t have much to fill it with. I have the one blurry ultrasound photo of the gestational sac long after the child had passed. Otherwise, I filled the box with cards, pressed flowers, and other memorial tokens sent by loved ones.
I felt confused and untethered, my mind filled with catastrophic thoughts. I decided to seek grief counseling. Our health insurance provider required that I get assessed before referring me for counseling. At the mental health clinic, the psychiatrist assessing me explained that bereavement isn’t a mental health disorder, and so the clinic couldn’t offer me many resources. I countered that I wanted only to see a grief counselor. She said a referral would take a week or two to go through, after which I would have to call clinics myself to find a good fit. I agreed and asked her to start the process. She added that it was normal to be upset since it had been only a week since the miscarriage but that it sounded as if I already had a good support system. She seemed to be trying to talk me out of pursuing counseling. I reiterated that I wanted to see a grief counselor, and she gave me a referral. Still, I was taken aback by how aggressive I had to be to get help.
The referral went through weeks later, but I still wasn’t able to see the counselor I chose because she required an authorization number from my insurance provider. I left multiple voicemails and emails requesting the number but getting no response until I filed a formal complaint. The entire process took months of persistence, all when I was already psychologically exhausted.
The first counselor I saw noted how early my pregnancy loss was, a common remark that tends to undermine loss parents’ grief. The counselor also repeatedly suggested that my grief over Scout might be only a surface emotion for deeper, longer-term issues in my life, seemingly implying it was abnormal to grieve this hard over just a pregnancy loss. Near the end of our first session, she remarked, “Well, I’m glad to work with you on processing your… well, I guess it’s like a miscarriage, isn’t it?” I did not continue to see her.
I did join pregnancy loss groups online, which helped significantly. However, it was disheartening to see so many grieving women also struggling with profound feelings of isolation. They reported countless comments from friends meant to be comforting but often quite hurtful: “At least it wasn’t a real baby.” “You can always have another.” “At least you know you can get pregnant.”
Fortunately, my social circles were far more supportive. And I’m very vocal about how I’m feeling and what I need. While my husband and I were processing this loss, our family and friends came around us, sending memorial gifts, cards, and flowers; regularly checking in to see how we were doing; using the name of our child and humanizing him or her; and generally marking the gravity of the loss. It helped.
Still, the rest of the pregnancy with the surviving twin was under a dark cloud, and when I birthed my son I was filled with a bittersweet mix of great joy to be holding him and great sorrow that Scout wasn’t with us.
For most of my adulthood, I’ve hoped for four children. Though the loss of Scout was devastating, I knew that frequently pregnancies with multiples have complications and that those complications don’t necessarily mean an elevated risk to getting pregnant again. So we did get pregnant again in spring 2021. I was happy but also anxious. My first trimester symptoms seemed milder than those of my prior pregnancies. I tried to wait patiently for the initial prenatal appointment without worrying about what I couldn’t control. It was difficult to do.
When my husband and I finally went to the appointment, I knew something was wrong by the way the OB spoke. With my prior pregnancies, she referred to the child as a “baby,” “little peanut,” or other colloquial phrases imparting affection and value. But as she conducted the ultrasound for this child, she was quieter. She said she wanted to make sure she could clearly see the “fetus.” I stared at the office ceiling lights, wondering how long these moments would drag on.
Then the OB told us: she could not find blood flow or a heartbeat. I swore and started crying. My husband teared up too, stroked my hair and held my hand.
This loss was a missed miscarriage, meaning my body had not naturally passed the remains. My OB told me that I could wait to see if I passed them naturally or I could take certain pills or undergo surgery to remove the remains. I had hoped to leave that appointment joyously announcing our pregnancy. I had hoped to provide a safe, nurturing environment for our family’s newest sibling. Instead, we headed home to discuss how to force my child out of my body.
We chose the surgery, which was scheduled for a week later. From our experience losing Scout, my husband and I knew we needed to have ritual and acknowledgment to process our grief. For this loss, there would be remains. We wanted to have them genetically tested for any insight about why I miscarried and then cremated and sent home with us, a physical testament to this child’s existence.
Although the healthcare providers were not resistant, they didn’t seem to know how to fulfill our requests. I believe if I were a less aggressive person or had fewer resources and advice from experienced friends, we would not have been able to handle this emotional crisis the way we wanted to.
There were four points at which our goals could have been thwarted:
First, when I asked my OB if the hospital could release the remains to us, she apologetically but firmly said no. But when I asked the surgery scheduling nurse the same question, she said it depended on which surgeon was removing the remains. Apparently, some surgeons know how to preserve remains for cremation, while others do not. The surgeon assigned to me called later to say she could save the remains. I was relieved but also noted the contradicting answers of the OB and surgeon. If I hadn’t asked a second time, I wouldn’t have known cremation was possible.
Second, the surgeon told me we could not have both genetic testing and cremation because the testing process renders the remains ineligible for release. I asked if the remains could be split, with a small sample for testing and the rest for cremation. The surgeon said she didn’t know but would find out. She called me back promptly to say that, yes, it could be done. I was grateful, but again she initially gave me incorrect information. I knew from my work in a forensics lab that it takes very little sample to conduct genetic testing, but without that background, I would again have thought our goals weren’t possible.
Third, through discussions with a friend who also experienced pregnancy loss, I learned many hospitals won’t release remains unless parents have processed paperwork with a funeral home in advance of the surgery. No one at the hospital had mentioned this, but when I arrived for the surgery, they did request paperwork. If my friend hadn’t forewarned me, it would have been too late to set up the release.
Fourth, to further complicate our situation, my husband, three living children, and I were moving out of state two weeks after my surgery. The funeral home needed us to get the remains to them promptly so they could complete cremation and release before we left. On the morning of the surgery, I asked the prepping nurse if the hospital lab could expedite the processing and release of the remains. She said expedited service wasn’t possible with so many other samples from other procedures submitted before ours. Nevertheless, when the surgeon came to discuss my procedure, I also asked her about expedited service. She asked another nurse to check with the lab. The lab quickly confirmed it could move our sample to the “front of the line” so the hospital could release the remains to the funeral home that same day. Again, I was initially given incorrect information. If I hadn’t asked a second time, we might not have been able to get the remains before we moved.
This level of persistence shouldn’t be necessary. Many people are not as insistent as I am, especially in the midst of grief and unfamiliar circumstances. Most parents would naturally assume their medical practitioners correctly understand hospital protocols and so would have given up on options that could have helped them heal. I’ve talked to many loss parents who lament not asking for the remains, as well as those who did ask only to have the hospital refuse release. These stories are filled with regret.
I have a good community around me. My friends and family were very supportive, and I found solidarity in online pregnancy loss groups. In contrast, the interactions I had with professionals left a lot to be desired. But it would not be difficult for the medical community to better serve loss parents.
Hospitals should train staff on available legal options and the steps necessary to streamline them. Staff should present these options at the same time parents receive news of the loss. Staff should be trained to recognize that pregnancy loss may be an emotional and psychological crisis, even if not a physical one. Research has shown that small steps, such as offering to create memorial gifts or referring for grief or spiritual counseling, serve to acknowledge the gravity of the loss and the validity of the parents’ grief. Such steps make the grief shorter-lived and less intense.
In the end, we were able to get our child’s remains tested and cremated. The testing revealed he had been a boy. We named him Hank. Testing also indicated Hank had a trisomy on his 16th chromosome. This information was a small comfort because trisomies are spontaneous genetic events. They don’t indicate ongoing physiological problems or increased risk of miscarriage. This information informed our decision to try once more for a fourth child, and as I write this, I have recently delivered my newborn daughter.
Copyright © 2023 Johns Hopkins University Press. This article first appeared in Narrative Inquiry in Bioethics. Snyder, M. (2022). Helping Loss Parents Heal After Miscarriage: The Critical Role of Medical Professionals. Narrative Inquiry in Bioethics 12(3), 194-197. https://www.muse.jhu.edu/article/880702