The maternal mortality rate in the United States continues to climb, with cardiovascular
disease as the leading cause for death in and around pregnancy. The racial disparities in
the United States are also concerning as African American women have a 4-fold higher risk
as compared to their Caucasian, Asian, or Hispanic counterparts. A Review To Action
report, a collaboration of nine states' maternal mortality review committees, published
in July 2018 determined that 63% of these deaths were preventable. Most deaths were
related to clinical, facility and system factors, including missed or delayed diagnosis,
inefficient response to obstetrical emergencies and poor communication and coordination
between team members. Understanding these trends on a national level is imperative if any
notable change is to be made. This requires filling the knowledge gaps that currently
exist, which can be accomplished by a national registry.
Marked improvements in treating congenital heart disease have led to more women with
repaired congenital cardiac malformations reaching reproductive age and desiring
fertility. Beyond the growth in the prevalence of congenital heart disease, acquired
cardiac disease-peripartum cardiomyopathy, ischemic heart disease, aortic dissection- are
increasing and are associated with the highest risk of maternal mortality. This is
particularly notable in the United States as compared to other countries where the rates
of obesity and metabolic disorders approach one-third of the adult population. Adding to
the complexity of the American demographics is the growing birthrate in women over 35
years of age. These trends mandate a reconceptualization of maternity care to recognize
the changing demographics of pregnancy in the United States and how the growing
prevalence of cardiac disease complicates care.
Other countries, particularly in Europe, have begun to investigate these issues, and as a
result, their maternal mortality rates are far better than the US. Part of the European
decline can be attributed to their robust prospective databases that assess pregnancy
throughout the antepartum and postpartum time frame. It is becoming the dominant source
of data in the medical literature describing the outcomes of patients with cardiac
disease in pregnancy, yet there is no such equivalent in the United States. Investigators
have yet to define the risks of pregnancy on both congenital and acquired disease states,
a critical knowledge gap that could be answered with a prospective, observational
registry of women with heart disease. The investigators propose to lead a prospective US
registry of pregnant women with cardiac disease to address the substantial gaps in
knowledge surrounding the baseline, clinical characteristics, and long-term
maternal-fetal outcomes.