Motherhood With MOtor Impairment Due to MAlady (Rare Disease)

Background Women with motor disabilities have the same well-founded desire to become a mother as other women. Despite dedicated aids and adapted supportive measures, they face social blame from persons who believe they are not apt to provide adequate care to their children. When a rare disease caused the disability, planning to become a mother is even more critical, since most perinatal care providers are unfamiliar with the condition, and specialists of the disease are unfamiliar with pregnancy. Unsurprisingly, data on motherhood in women with rare diseases resulting in motor impairment are scarce.

The institutions of the investigators run a joint care program dedicated to future parents and parents with disabilities, namely:

• Hôpital Universitaire Pitié Salpêtrière- Charles Foix (assistance Publique Hôpitaux de Paris and Université Paris 6), providing a gynecological and perinatal unit with care programs adapted to women with disabilities, plus a number of reference centers for rare neurologic and muscular diseases including research and clinical care.
• Service d'Aide à la Parentalité des Personnes en Situation de Handicap (SAPPH, Fondation Hospitalière Sainte Marie) providing training and support to parenthood to persons with motor or sensory disabilities. This training program aims at recognizing parental capacities, and if necessary enhancing them by information, training, adapting the environment, or seeking extra human help.

The investigators felt the need to evaluate the outcome of our program, in terms of quality of infant environment, development, attachment, and interactions with their disabled mother. The investigators focused on parenthood in women with a rare disease resulting in motor impairment, a research field remaining largely unexplored so far.

Hypothesis Our hypothesis is that when provided with a specific care program, mothers with motor impairment due to a rare disease and their partners have the capacity to offer their children appropriate social environment and care, resulting in child development, mother-infant attachment, and mother- infant interactions being similar to what one would expect in women without motor impairment.

Objective Primary objective To describe social environment, child development, mother-infant attachment, mother- infant interactions, when the mother has motor impairment due du a rare disease.

Secondary objective

1. To describe maternal and perinatal outcome when the mother has motor impairment due du a rare disease

2. To explore a potential relation between the outcome criteria of the primary goal with

   • The severity of motor impairment
   • The causal disease
   • The personal history of the mother including her access to adapted care prior to pregnancy during pregnancy and post-partum
   • The social status of the family
   • The emotional status of the mother
3. To compare the distribution of primary goal outcome criteria in our study population to what is expected in the general population, when appropriate
4. To compare the distribution of primary goal outcome criteria in our study population to what we observed in women with motor impairment that does not result from a rare disease
5. To describe the needs expressed by women regarding medical care, psychological, social, and environmental support

Eligibility criteria Please see specific box

Outcome measurements (assessed at least once before the age of 14 months, see specific box) Primary outcome Child development /Infant attachment /Social environment /Mother infant interaction/ Child protection legal decisions if applicable Secondary outcome Demographic and social characteristics Disease or event causing impairment Obstetrical history Somatic and psychic events before, during pregnancy, and post-partum History of access to care Severity of impairment and handicap Maternal emotional status Needs expressed by women regarding medical care, psychological, social, and environmental support

Study design Pre inclusion: written and verbal information on the study to all women with motor impairment seeking care either at the Pitié Salpétrière Maternity unit or at the Service d'Aide à la Parentalité pour les Personnes en Situation de Handicap (SAPPH) Inclusion visit: During a planned training session, either pre natal or post natal Follow up visit: once of twice before the child is 14 months. A specific consent of both parents will be required for all outcome criteria concerning the infant.

Research visits will take place during usual visits of our parenthood support and training program.

Analysis The investigators shall describe the distribution of the primary outcome measurements in the subgroup of women with motor impairment related to a rare disease. The investigators shall compare this distribution to the expected distribution in the general population, and to that observed in women with motor impairment unrelated to a rare disease. The investigators shall also study primary outcome measurements as a function of the severity of maternal disability, of the mother's social characteristics and emotional status.

The investigators shall also describe the distribution the distribution of perinatal morbidity globally, and as a function of the potential explanatory variables mentioned above.

the investigators shall also report on the opinion of women regarding the support they were offered so far, and the support they declare they should benefit from.