Prior to becoming pregnant, Karen and her husband endeavored to learn as much as they could about pregnancy and spinal cord injuries but were surprised to discover that there was very little information available on this topic.
Fortunately, Karen is now the mom of two healthy children. She vowed during her first pregnancy that she would find a way to help women with spinal cord injuries to have easier access to knowledgeable information about pregnancy and parenting. She reconnected with the various professionals she had met who had an expertise in this area and invited them to join her in creating the Spinal Cord Injury Perinatal Interest Group.
Karen’s personal experience and the collective clinical expertise of the group has led to a milestone achievement, the launch of the Pregnancy and Spinal Cord Injury: an information booklet for women with spinal cord injury on Mothers Day 2015. This booklet is freely available in both print form and online and provides women with spinal cord injury the information they need to make informed decisions when embarking on the journey to motherhood.
The Spinal Cord Injury Perinatal Interest Group (SCI -PIG) was formed in 2013 and is a multi-disciplinary (nurses, researchers, physician, and mother with a SCI) with representation from multiple organizations (Spinal Cord Injury BC, BC Women's Hospital, Vancouver Coastal Health).
This small, dedicated group has already achieved success in identifying the key barriers and gaps in knowledge about pregnancy and spinal cord injury, and raising awareness amongst clinicians and women with spinal cord injury about the potential to have children after spinal cord injury.
Facts and Achievements:
According to the Rick Hansen Spinal Cord Injury Registry, there are over 330 Canadian women with traumatic spinal cord injury who are of childbearing age. The number of women with non-traumatic spinal cord injury and related disabilities is much higher.
In 2013, the Spinal Cord Injury Perinatal Interest Group hosted a national workshop in Vancouver for clinicians, researchers and women with SCI to share information, identify current gaps, and develop an action plan to develop information resources and awareness.
A YouTube video to raise awareness that pregnancy after spinal cord injury is possible was developed: see it here.
Members of the Spinal Cord Injury Perinatal Interest Group have presented their research and information at several national and international clinical, research, and consumer-focused conferences.
Creation of Pregnancy and Spinal Cord Injury: an information booklet for women with spinal cord injury: this consumer-oriented brochure and information booklet for women with SCI who are considering pregnancy outlines key things to consider during the perinatal period (pre-conception, conception, pregnancy, labour and delivery and postpartum) and where to go to get additional information, help and services.
This project was initially funded by the Rick Hansen Institute, with in-kind contributions from Spinal Cord Injury BC and all members of the Spinal Cord Injury Perinatal Interest Group.
If you're a woman with a spinal cord injury considering having a child and you have questions, please send us a message at firstname.lastname@example.org and we'll help guide you through a pre-pregnancy medical review with Maternal Fetal Medicine experts.