Ava was excited about her pregnancy. As her rheumatologists, we were anxious about it. Her death left a newborn without its mother, shattered a family, and may be a harbinger of what’s to come for pregnant people with serious medical conditions.
Ava (not her real name) was a 28-year-old Hispanic woman with systemic lupus erythematosus, an autoimmune disease in which the immune system mistakenly attacks the body’s tissues and organs. She was our patient when Roe v. Wade protected access to abortion.
Pregnancy can be a precarious time for women with lupus and other autoimmune diseases. Sometimes the fetus is at risk; sometimes the mother. Terminating the pregnancy can be needed to safeguard the mother’s health.
In addition to lupus, Ava had pulmonary hypertension, a serious heart and lung condition. Up to three in ten people with pulmonary hypertension die in pregnancy. Maternal health outcomes in the United States already disproportionately affect poor people and people of color. Black women are 2.9 times more likely than white women to die as a result of childbirth or pregnancy; the rate for Hispanic women in New York City is nearly as high. Having an autoimmune disease further widens this disparity.
Knowing her risk of dying, Ava made the difficult decision to terminate her pregnancy. Navigating the U.S. health care system is not easy under the best of circumstances. Ava, who was on public insurance and a non-native English speaker, found navigating the systemic barriers overwhelming. She was turned away by a community abortion clinic because clinicians there believed it was unsafe to terminate her complicated pregnancy in an outpatient setting. Then, when she sought care at a major public medical center, she had trouble securing a timely appointment that would comply with termination laws in New York State.
Frustrated and frightened by this deadline, she decided to go forward with her pregnancy and returned to us. Despite our anxieties and entreaties to terminate the pregnancy, she stood firm. With expert high-risk obstetric care, she gave birth to a healthy boy. But the next day, while still in the hospital, she experienced a severe complication of pulmonary hypertension and died, despite doctors’ and nurses’ best efforts.
By setting aside Roe v. Wade, the Supreme Court put abortion out of reach for many people like Ava, intimidates others into inaction, and jeopardizes maternal health. Abortion is now banned in 12 U.S. states and counting. Timely access to this important medical procedure must remain a fundamental reproductive right in the U.S., where pregnancy-related complications and death are already higher than in any other industrialized nation. For individuals with autoimmune diseases, the risks during pregnancy and afterward are even higher. People with a condition called antiphospholipid syndrome, for example, have exceptionally high risks of both fetal loss and dangerous blood clots during and after pregnancy. Those with lupus are up to six times as likely as others to develop preeclampsia, a type of high blood pressure that threatens both mother and child. People with severe lupus may also need to take medications that can cause birth defects or miscarriage.
Years later, Ava’s death still haunts us, as does the knowledge that deaths like hers will happen more frequently in the years to come.
In every corner of the U.S., regardless of abortion laws, people of childbearing age with autoimmune diseases and other conditions weigh the possibility of high-risk pregnancy-related complications with the likelihood of a healthy birth. Without proper reproductive planning and access, the risk increases for serious or even catastrophic outcomes for the pregnant person and baby. As rheumatologists, we believe — as do our colleagues in other specialties — that Dobbs v. Jackson impairs our ability to provide our patients with the best medical care, infringes on patients’ reproductive rights, and condemns vulnerable people to a dangerous uphill battle.
Clinicians and advocates must continue the fight to protect abortion as an essential health care right.
Jammie Law is a rheumatology fellow at NYU Grossman School of Medicine. Michael Pillinger is a rheumatologist and a professor of medicine at NYU Grossman School of Medicine. Julie Nusbaum is a rheumatologist and an assistant professor of medicine at NYU Long Island School of Medicine.