Abstract
BACKGROUND: Issues of fertility and pregnancy place an extra burden on females with primary immunodeficiencies. Patients lack reliable information and providers lack guidelines to counsel patients on these anxiety-provoking matters. OBJECTIVE: To collate concerns and experiences related to fertility and pregnancy from females with humoral immune deficiencies. METHODS: We conducted an internet-based survey of female patients who self-identified as having a diagnosis of primary humoral immune deficiency. RESULTS: Responses from 490 women with common variable immune deficiency and 100 with hypogammaglobulinemia were evaluated. The reported fertility measure (% of women who had had a birth) was statistically significantly lower as compared to the general US population (70 % vs. 85 %, p < 0.0001) whereas the rates of spontaneous pregnancy loss were comparable. This group reported a total of 966 pregnancies; 72 % resulted in a live birth. A majority of the pregnancies progressed with no incident and with continuation of their IgG replacement therapy; 23 % reported an increase in IgG dosing during pregnancy. Only 15 % of those reporting a first pregnancy indicated that they had been diagnosed with immune deficiency prior to their first pregnancy; these women expressed concern regarding the effect of immune deficiency on their fertility, pregnancy and decision to have children. CONCLUSION: With inherent limitations of self-reported responses to surveys, females with humoral immune deficiencies reported relatively good rates of fertility and pregnancies ending in live births. Results of the survey will serve as peer support for patients and inform counseling guidelines for providers.