Navigating the stigma, mental toll, and difficult conversations with family, friends, and doctors – a Jefferson researcher shares her experiences and what she’s learned from studying a grieving community.
“Seeing an empty, blank circle on that ultrasound screen when I was expecting to see a baby – my whole world came crashing down that morning,” recalls Amy Henderson Riley, DrPH, of that cold, dark day in February, 2016. A miscarriage.
Dr. Riley would experience this devastation not once, twice, or thrice, but six more times. She endured an unimaginable toll on her mental health and body, and a seemingly never-ending cycle of grief. When the hope of getting pregnant naturally and later when IVF failed, Dr. Riley and her husband, committed to having a family, started looking into adoption. Then, almost three years after that dreadful winter day, Dr. Riley discovered she was pregnant again. And this time when she went in for her ultrasound, a glimmering heartbeat of a healthy baby appeared on the black screen, against all odds. They welcomed their daughter, named Betty Sue, in October, 2019.
While multiple miscarriages, or what is clinically defined as recurrent pregnancy loss, is very rare, about 10-20% of all known pregnancies end in miscarriage. Despite its common occurrence, there is still a lot of stigma surrounding miscarriage and many women find themselves in an isolating grieving process, their emotional and psychological needs often unmet. With Mother’s Day approaching this weekend, this grief can be amplified and a day that is a celebration for many, can be a source of intense pain for others.
We sat down with Dr. Riley, who is a health communication researcher at Jefferson’s College of Population Health, who shared what she wished she knew, and what she wished others knew about miscarriage, based on her own experiences and her research.
I Wish You Knew That It’s Not Your Fault
A miscarriage is when a fetus or embryo dies before the 20th week of pregnancy. In 50% of cases, the cause of the miscarriage is unknown or unexplained.
“There was no scientific explanation for why I was miscarrying,” says Dr. Riley. “Each time I was told – ‘You’re young and healthy, this is just bad luck’. As a believer of science and someone who deals with numbers for a living, it was hard to accept that there was no cause or rationale I could point to.”
As often happens when there is no explanation, the rationalization turns inward.
“Women start to think – ‘Was it something I did?’ We scrutinize every choice we’ve made, every aspect of our lives and lifestyle,” says Dr. Riley. “Even though, intellectually we know we haven’t done anything wrong.”
What’s worse is that these thoughts are sometimes echoed by those around women who’ve experienced a pregnancy loss. This fuels a harmful culture of blame, and discourages women from opening up about their experiences.
“I want all women who are going through this to know – it isn’t your fault.”
I Wish Doctors Knew That Grief After a Miscarriage is Real and Valid
In the process of finding support through her own experiences, Dr. Riley came across a hashtag on social media – #ihadamiscarriage. It was a campaign started by Dr. Jessica Zucker, a clinical psychologist specializing in women’s reproductive and maternal mental health, to address the silence around miscarriage. Through heart-breaking and honest testimonials, it became clear to Dr. Riley that women felt that there were few spaces for grief associated with pregnancy loss.
“I think there’s this notion that because you never held that baby in your arms or gave it a name that somehow the loss of a child through miscarriage is not valid,” says Dr. Riley. “But your grief is absolutely valid.”
In hopes of giving back and bolstering their voices, Dr. Riley teamed up with colleagues in her department, and Rebecca Mercier, MD MPH, assistant professor and OB-Gyn doctor at Jefferson Health to research these stories on social media and how they could impact how miscarriage is approached in the clinic.
“The extent to which this loss affects women and their families, and the longevity of their grief is a blind spot for clinicians,” says Dr. Mercier. “We have to recognize that their grief is valid, and has real repercussions when it comes to family identity.
I Wish Friends and Family Knew That Saying Things Like “Everything Happens For a Reason” May Be Hurtful
“I had a great support system throughout my pregnancy losses,” says Dr. Riley, “But there’s always those statements that, while well-meaning, should not be said to someone who’s just been through a miscarriage.”
“I would suggest just not using the phrase ‘At least’ at all,” says Dr. Riley. “And things like ‘It just wasn’t meant to be’ is a devastating thing to hear. It also sets up a dangerous precedent for blame and adds to the shame.”
Bringing over a meal, flowers, or a bottle of wine can be thoughtful gestures. Just sitting with the person and listening can also go a long way.
I Wish Men Knew They’re An Important Part of the Conversation
While studying the testimonials on the #ihadamiscarriage campaign on social media, Dr. Riley noticed that women were essentially opening up to strangers about feelings and perceptions that they hadn’t even shared with their own partners, spouses or families. “It speaks to how powerful this community is,” she says, “but it also is indicative of the bigger challenge surrounding the role of men or a partner in the conversation about miscarriage.” Men also experience grief and loss, but they don’t experience the physicality of a miscarriage the way a woman does; some men may feel as though they have to hide or ignore their own grief so they can be there for their partner. Men may also experience or express their grief very differently to women, and so women may not feel comfortable opening up to their partners about what they’re going through.
“I think the key is to give each other time, and to be supportive of each other, whatever may come up,” says Dr. Riley. “It would be so helpful though to have more messaging or materials in a doctor’s office about how men can support themselves and their partner or wife through a miscarriage.”
I want all women who are going through this to know – it isn’t your fault. – Amy Henderson Riley
I Wish You Knew That It’s OK to Seek Out Support
It can be mentally taxing to go through a miscarriage and the ensuing grief. After her sixth miscarriage, Dr. Riley sought out a therapist who specializes in maternal mental health. “That support was critical for me,” she says. “So many people were around me were getting pregnant, and it just seemed like there was no hope for my husband and me. It was hard to bounce back from the devastation of that loss every time.” The fear of that loss did not disappear when she was pregnant (for the seventh time) with her daughter. “Even though my body felt so different this time, I just didn’t let myself believe that the outcome wouldn’t be any different than all the previous times. It was nerve-wracking. I worked with my therapist to manage all those emotions.”
While recognizing that not everyone may be able to afford counseling services, Dr. Riley hopes that grief support and counseling will be built into the clinical care for women and their partners.
“As clinicians, we’re trained to provide for women’s medical needs as they go through a miscarriage. We don’t always have to tools to address the emotional needs,” says Dr. Mercier. “The findings from our study on the #ihadamisarriage stories will hopefully encourage clinicians to approach this subject with bereaved parents with more respect and empathy, and point patients to the appropriate coping tools and resources, which includes social media.”
I Want You To Know That There is Hope
One of the many fears that women may experience after a pregnancy loss is that they’ll never get pregnant again. In fact, the vast majority of women go on to have successful pregnancies after a miscarriage.
“I learned about the term ‘rainbow baby’ through the course of our research – it is used for a successful pregnancy after miscarriage, stillbirth and other types of neonatal loss,” says Dr. Riley. “It doesn’t negate the grief and sadness of the storm, but the rainbow does reflect the experience for some. The idea resonated with me personally, how throughout my experience, I never lost sight of how much my husband and I wanted to raise a family together.”
Social media campaigns like the #ihadamiscarriage is a sign that the cultural landscape is changing, and there will continue to be more openness around miscarriage. Many celebrities and societal leaders, including Michelle Obama, Beyoncé, Ali Wong, and Carrie Underwood, have also opened up about experiencing miscarriage, encouraging more honest conversations in public.
Dr. Riley is also hopeful that there will be more studies like the one she conducted with her colleagues to help inform patient care.
“This is a clear example of looking at a clinical problem through a public health lens and why this collaborative research is so important,” she says. “These testimonials can inform how providers care for patients with very specific needs, and be proactive in addressing them.’’
Below are links to resources for women and their families navigating pregnancy loss including miscarriage, stillbirth, and ectopic pregnancy, as well as infertility:
- Jefferson University Hospital
- RMA Philadelphia
- Whole Heart Maternal Health – A Philadelphia-based practice specializing in reproductive, maternal and paternal mental health