Childbirth and motherhood in women with motor disability due to a rare condition: an exploratory study

Marc Dommergues,Edith Thoueille,Drina Candilis,Sylvie Viaux-Savelon,David Cohen,Ludivine Becerra

doi:10.1186/s13023-021-01810-8

Abstract

BackgroundRare diseases may result in motor impairment, which in turn may affect parenthood. Our purpose was to evaluate perinatal outcomes, parenting needs, mother-infant interactions and infant development in a set of volunteer women with motor impairment due to a rare disease. In a parenting support institution, we recruited a consecutive series of 22 volunteer pregnant women or young mothers, recorded perinatal outcomes, and followed mother-infant interaction and relationship and infant development up to 14 months postpartum. Cases with intellectual or psychic disability were not included.ResultsThere were 11 genetic diseases (2 Spinal Muscular Atrophy, 1 Charcot-Marie-Tooth, 1 autosomal dominants myopathy, 1 mitochondrial disease, 2 Elhers-Danlos, 1 Friedreich ataxia, 1 spinocerebellar ataxia, 1 tetrahydrobiopterine deficiency,1 Ectrodactyly), and 11 rare non-genetic conditions (2 spine tumors, 2 strokes, 1 juvenile chronic arthritis, 3 birth injuries, 1 inflammatory myopathy, 1 congenital amputation, and 1 traumatic amputation). These resulted in 10 impairments of four limbs, 4 impairments of both lower limbs, 7 unilateral impairments, and one distal tremor. Social deprivation Epices score, Cutrona social support scale, Edinburg Postnatal Depression scale, and Spielberger State/Trait Anxiety Inventory were unremarkable. Perinatal outcome: 4 gestational diabetes, 1 pre-eclampsia, 9 caesareans, 6 assisted and 7 spontaneous vaginal deliveries, 20 term live-births and 2 premature deliveries (35–36 weeks). Twelve women declared they were self-sufficient for daily activities; six declared they were self-sufficient to provide basic care to their baby. Distribution of the Brunet-Lezine child development score was normal. The parent-infant relationship global assessment scale (PIR-GAS) was well adapted in 2 cases, adapted in 8, perturbed in 7, significantly perturbed in 2, and distressed in 3 (mean 71.8; 95% CI 49.6–93.9). This was unrelated to any somatic or emotional characteristics of the participants. Coding interactive behavior revealed that infant engagement was lower and infant avoidance greater than in controls (p < 0.05).ConclusionInfant development was normal, but mother-infant interactions were altered in half of the participants independently from the degree of motor impairment, underscoring the need for parenting support, even for parents who are self-sufficient in daily activities.

Highlights

Rare diseases may result in motor impairment, which in turn may affect parenthood
Due to improved medical care, a growing number of women affected with a rare disease reach childbearing age and have the same well-founded desire to become a mother as other women
The type of motor impairment is displayed on Table 1

Summary

Introduction

Rare diseases may result in motor impairment, which in turn may affect parenthood. Our purpose was to evaluate perinatal outcomes, parenting needs, mother-infant interactions and infant development in a set of volunteer women with motor impairment due to a rare disease. Due to improved medical care, a growing number of women affected with a rare disease reach childbearing age and have the same well-founded desire to become a mother as other women Their ability to provide a safe environment for their child may be questioned by their families or by professionals, including social workers, nurses, midwives, or doctors [5,6,7,8]. Women with disabilities often fail to obtain financial support to help them gain independence as caregivers to their children These difficulties partly result from the scarcity of data on pregnancy, parenthood, and children’s outcomes in women affected by a rare disease with a motor expression. We recruited volunteers attending our parenting support facility for disabled persons, who consented to report on their experience as parents, have their child’s development assessed, have their infant screened for withdrawal, and undergo assessment of mother-infant relationship and interaction

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Conclusion