The Outcomes and Experience of Pregnancy in Limb Girdle Muscular Dystrophy Type R9
Eric Libell1, Noelle Bowdler2, Carrie Stephan1, M. Bridget Zimmerman3, Amber Gedlinske1, Katherine Mathews1
1University of Iowa - Dept of Pediatrics, 2University of Iowa- Dept of OBGYN, 3University of Iowa- Dept of Biostatistics
Objective:
We aim to describe the outcomes and experiences of pregnancy in a cohort of women with limb girdle muscular dystrophy type R9 (LGMDR9).
Background:
Published information about the experiences of pregnancy in LGMD is limited and does not specify LGMD type, limiting utility. Previous reports of pregnancy and LGMD showed higher rates of assisted deliveries, with half of the participants experiencing worsening of muscle weakness. Most pregnancies and infants in those studies were uncomplicated.
Design/Methods:
All women 18 years of age or older with a genetic and clinical diagnosis of LGMDR9 who are enrolled in the University of Iowa Wellstone dystroglycanopathy natural history study (clinicaltrials.gov NCT00313677) were invited to complete a questionnaire about their pregnancy experiences, including questions about pregnancy complications, muscle symptoms experienced during pregnancy, and post-partum course.
Results:
A total of 22 women responded to the survey. Thirteen women reported 26 live births. The majority of pregnancies that resulted in a live birth were uncomplicated (n=19, 73%), and most infants had no complications (n=25, 96%). The rates of assisted vaginal delivery (n=9, 35%) and induction of labor (n=18, 70%) were both significantly higher than the national average. Almost half of pregnancies (n=11, 42%) resulted in increased weakness during pregnancy; only 1 returned to pre-pregnancy baseline.
Conclusions:
The data presented here suggest that women with LGMDR9 who are considering a pregnancy should be counseled that they might have a higher likelihood of induced labor, assisted vaginal delivery, and could experience progression of weakness. These results are generally consistent with previous reports, but future studies of pregnancy in defined subtypes of LGMD will be required to confirm these findings and determine if risks vary by genotype.