Hope and Choice After a Severe Fetal Diagnosis: Your Stories Can Make a Difference
By: Abigail Wilpers, PhD, WHNP-BC
When pregnant people face what is often described as the hardest experience of their lives – the diagnosis of a life-limiting, life-threatening, or life-altering fetal condition – they need hope.
Within the high-risk perinatal care community, we understand that hope takes on diverse meanings for each person. After the diagnosis of a severe fetal condition, some pregnant patients and families find hope in interventions, like prenatal surgery which may improve the odds of survival for conditions such as twin-to-twin transfusion syndrome. Following a life-limiting fetal diagnosis, expectant parents may find hope in perinatal palliative care and the opportunity to hold their baby for the few brief moments of their life. Abortion care can also provide hope to some families who want to protect their baby from suffering after birth.
An array of factors shape what hope looks like for each individual and family, yet a unifying thread lies in the power of choice.
Attacks on abortion care are harmful to all these choices that can give families the hope they need. This concept is not easily understood by policymakers but can be poignantly illustrated by clinical stories.
For example, a recent NPR story described Lauren Miller’s experience, pregnant with twins, needing to “escape” her home state of Texas to receive evidence-based care after one twin’s complex condition put both twins at risk of dying. As a former fetal therapy nurse, I know the option of selective reduction provides a safe, effective, and beneficial treatment for many complex and nuanced cases of multiple gestations. However, aggressive restrictions on abortion care are prohibiting selective reduction and will, or likely already have, resulted in some people losing multiple expected children, rather than one. So, when anti-abortion policymakers say that maternal-fetal surgery has rendered termination of pregnancy for fetal anomalies unnecessary, we need more maternal-fetal medicine physicians and other perinatal experts to directly call this out as wrong and contradictory. One of the most successful life-saving maternal-fetal surgeries is, in fact, a form of abortion.
Attacks on abortion care can also harm people’s ability to choose perinatal palliative care – turning what can be a hopeful and therapeutic experience into “pure torture.” As a recent story from the Washington Post illustrated, Deborah Dorbert, who discovered her fetus had a life-limiting condition, was forced to continue her pregnancy when she was declined abortion care due to Florida’s new restrictive laws. Ms. Dorbert’s account of how involuntary perinatal palliative care harmed her mental health is haunting and crucial for policymakers to understand, especially when the leading causes of maternal mortality in the U.S. are mental health related.
In addition to sharing stories from abortion restrictive states, we must also share our experiences with people who are able to choose termination of pregnancy for a fetal anomaly. In contrast to how this choice is often characterized by anti-abortion leaders, parents who choose to end a pregnancy complicated by a severe fetal anomaly often describe it as a compassionate parenting decision. These stories are relatively hidden, which puts patients in the position of needing to speak out on their own. For example, Dr. E Goldblatt Hyatt shared their story of choosing abortion care for their very loved son, Darby, after he was diagnosed with a life-limiting condition.
It may not be possible to “call in” people whose anti-abortion policies seem to actually conflict with their values on parenting autonomy and maternal health. But if anyone can, I think it’s the maternal-fetal medicine community. By sharing stories of the people we serve, we can help communities and policymakers understand these broader impacts of attacks on abortion care, which extend far beyond limiting a single choice. Among other serious harms, anti-abortion policies deprive individuals of much-needed hope.
This is why it is critical that we speak up against anti-abortion policies. Below are concrete opportunities you can take to join in the fight to protect and expand access to abortion care:
Join SMFM’s State Liaison Network to stay up to date on policies and advocacy opportunities in your state.
Track pending legislation in your state and get support from SMFM staff on your advocacy efforts.
Use the links in this blog to share these patient stories with your networks and colleagues.
Share your stories of clinical care with the Care Post Roe Project or with SMFM.
Talk with colleagues about the importance of getting involved in this work.
Connect with state and local coalitions of reproductive health, rights, and justice advocates – they have been in this fight for a long time and can catch you up to speed. SMFM’s Manager of State Advocacy, Samantha Berg, MPH, can help you get started. Email her at sberg@smfm.org for specific suggestions in your area.
Abigail Wilpers, PhD, WHNP-BC, is an Assistant Professor at the University of Pennsylvania School of Nursing and the Children’s Hospital of Philadelphia. Through policy-relevant and community-engaged research, she strives to build knowledge and partnerships between maternal-fetal medicine and the Reproductive Justice movement to enhance care and equity for people experiencing fetal complications during pregnancy. Follow her on Twitter @AWilpers.