Breastfeeding Following Spinal Cord Injury: Consumer Guide for Mothers.

The World Health Organization (WHO) recommends that infants be breastfed exclusively for the first 6 months of age. However, there are few resources available on the effects a spinal cord injury (SCI) can have for breastfeeding mothers. It is difficult to find information to address the unique challenges women with SCI experience when planning or trying to breastfeed. Our international team, including women with SCI, health care providers, and SCI researchers, aims to address the information gap through the creation of this consumer guide. The purpose of this consumer guide is to share the most common issues women with SCI experience during breastfeeding and provide information, practical suggestions, recommendations, and key resources in lay language. General information about breastfeeding is available on the internet, in books, or from friends and health care providers. We do not intend to repeat nor replace general breastfeeding information or medical advice. Breastfeeding for mothers with SCI is complex and requires a team of health care providers with complementary expertise. Such a team may include family physician, obstetrician, physiatrist, neurologist, occupational and physical therapist, lactation consultant, midwife, and psychologist. We hope this consumer guide can serve as a quick reference guide for mothers with SCI planning of trying to breastfeed. This guide will also be helpful to health care providers as an educational tool.

Motherhood after Spinal Cord Injury: Breastfeeding, Autonomic Dysreflexia, and Psychosocial Health: Clinical Practice Guidelines.

The World Health Organization (WHO) recommends that children be breastfed exclusively for the first 6 months of age. This recommendation may prove challenging for women with spinal cord injury (SCI) who face unique challenges and barriers to breastfeeding due to the impact of SCI on mobility and physiology. Tailored provision of care from health care professionals (HCPs) is important in helping women navigate these potential barriers. Yet, HCPs often lack the confidence and SCI-specific knowledge to meet the needs of mothers with SCI. An international panel of clinicians, researchers, consultants, and women with lived experience was formed to create an accessible resource that can address this gap. A comprehensive survey on breastfeeding complications, challenges, resources, and quality of life of mothers with SCI was conducted, along with an environmental scan to evaluate existing postpartum guidelines and assess their relevance and usability as recommendations for breastfeeding after SCI. Building on this work, this article provides evidence-based recommendations for HCPs, including but not limited to general practitioners, obstetricians, pediatricians, physiatrists, lactation consultants, nurses, midwives, occupational therapists, and physiotherapists who work with prospective and current mothers with SCI.

Effect of epidural spinal cord stimulation on female sexual function after spinal cord injury.

Sexual dysfunction is a common consequence for women with spinal cord injury (SCI); however, current treatments are ineffective, especially in the under-prioritized population of women with SCI. This case-series, a secondary analysis of the Epidural Stimulation After Neurologic Damage (E-STAND) clinical trial aimed to investigate the effect of epidural spinal cord stimulation (ESCS) on sexual function and distress in women with SCI. Three females, with chronic, thoracic, sensorimotor complete SCI received daily (24 h/day) tonic ESCS for 13 months. Questionnaires, including the Female Sexual Function Index (FSFI) and Female Sexual Distress Scale (FSDS) were collected monthly. There was a 3.2-point (13.2%) mean increase in total FSFI from baseline (24.5 ± 4.1) to post-intervention (27.8 ± 6.6), with a 4.8-50% improvement in the sub-domains of desire, arousal, orgasm and satisfaction. Sexual distress was reduced by 55%, with a mean decrease of 12 points (55.4%) from baseline (21.7 ± 17.2) to post-intervention (9.7 ± 10.8). There was a clinically meaningful change of 14 points in the International Standards for Neurological Classification of Spinal Cord Injury total sensory score from baseline (102 ± 10.5) to post-intervention (116 ± 17.4), without aggravating dyspareunia. ESCS is a promising treatment for sexual dysfunction and distress in women with severe SCI. Developing therapeutic interventions for sexual function is one of the most meaningful recovery targets for people with SCI. Additional large-scale investigations are needed to understand the long-term safety and feasibility of ESCS as a viable therapy for sexual dysfunction. Clinical Trial Registration:https://clinicaltrials.gov/ct2/show/NCT03026816, NCT03026816.

Characterization of heart rate changes associated with autonomic dysreflexia during penile vibrostimulation and urodynamics.

STUDY DESIGN: Secondary data analysis. OBJECTIVES: To characterize autonomic dysreflexia (AD) associated heart rate (HR) changes during penile vibrostimulation (PVS) and urodynamic studies (UDS). SETTING: University-based laboratory. METHODS: We analyzed blood pressure (BP) and HR data, recorded continuously, from 21 individuals (4 females; median age 41 years [lower and upper quartile, 37; 47]; median time post-injury 18 years [7; 27]; all motor-complete spinal cord injury (SCI) except one; cervical SCI = 15, thoracic [T1-T6] SCI = 6), who underwent PVS (11/21) or UDS (10/21). RESULTS: Overall, 47 AD episodes were recorded (i.e. PVS = 37, UDS = 10), with at least one AD episode in each participant. At AD threshold, bradycardia was observed during PVS and UDS in 43% and 30%, respectively. At AD peak (i.e., maximum increase in systolic BP from baseline), bradycardia was observed during PVS and UDS in 65% and 50%, respectively. Tachycardia was detected at AD peak only once during UDS. Our study was limited by a small cohort of participants and the distribution of sex and injury characteristics. CONCLUSIONS: Our findings reveal that AD-associated HR changes during PVS and UDS appear to be related to the magnitude of systolic BP increases. Highly elevated systolic BP associated with bradycardia suggests the presence of severe AD. Therefore, we recommend cardiovascular monitoring (preferably with continuous beat-to-beat recordings) during PVS and UDS to detect AD early. Stopping assessments before systolic BP reaches dangerously elevated levels, could reduce the risk of life-threatening complications in this cohort.

The availability and quality of breastfeeding guidelines for women with spinal cord injury: a narrative review.

STUDY DESIGN: Narrative review. OBJECTIVES: To evaluate the availability and quality of breastfeeding guidelines for women with spinal cord injury (SCI). SETTING: International Collaboration on Repair Discoveries (ICORD), Department of Medicine, Vancouver, BC. METHODS: An environmental scan restricted to English language literature was performed to identify existing postpartum and breastfeeding guidelines. Guidelines were evaluated using a structured, validated tool (AGREE II) by 13 appraisers [medical/research experts (n = 10) and those with lived experience (n = 3)] from Vancouver and two international sites. Seven guidelines were evaluated across Domain 1 of the AGREE II tool to determine if they were applicable to mothers with SCI/physical disabilities. Domains 2 to 7 were evaluated if the guideline made mention of the SCI population. RESULTS: Of the seven guidelines evaluated, only one mentioned SCI (Postpartum Care in SCI from BC Women's Hospital). Other guidelines were excluded from further evaluation as they did not address the issue of breastfeeding in women with SCI. The overall scaled score for this guideline was 34.5%. There was significant variability between domains but no AGREE II domain scored greater than 50%, indicating substantial limitations. CONCLUSIONS: Current breastfeeding guidelines are not targeted to persons with SCI. The one guideline that made mention of women with SCI had significant global deficits. This highlights the importance of developing guidelines for health care providers focused specifically on women with SCI to support and optimize breastfeeding in this unique population for the benefit of mother and infant across the lifespan.

Prevalence of postpartum depression and anxiety among women with spinal cord injury.

Objective: To examine the prevalence of postpartum depression (PPD) and postpartum anxiety (PPA) in mothers with spinal cord injury (SCI).Design: Retrospective, cross-sectional study.Setting: Online multi-national study.Participants: We surveyed an international sample of 102 women who gave birth following cervical SCI (C1-C8, n = 30), upper thoracic SCI (T1-T6, n = 12) or lower level SCI (T7 & below, n = 60). Participants were primarily from Canada and Sweden, and mean age at childbirth was 30 ± 6 years.Outcome Measures: Subscales from the Pregnancy Risk Assessment Monitoring System (PRAMS) were used to measure PPD (PRAMS-3D) and PPA (PRAMS-2A).Results: PPD and PPA were most prevalent in women with cervical SCI, followed by upper thoracic SCI then lower SCI. Self-reported PPD was more prevalent than clinically diagnosed PPD in women with cervical SCI (P = 0.03) and upper thoracic SCI (P = 0.03). With cervical SCI, 75% of women diagnosed with MDD before pregnancy scored >9 on the PRAMS PPD subscale, indicating clinically relevant PPD. However, only 10% were diagnosed with PPD. Of women with lower SCI diagnosed with MDD before pregnancy, 25% had a clinically relevant score for self-reported PPD; 7% were diagnosed.Conclusions: This is currently the largest study examining PPD and PPA after SCI. Clinicians should be aware that mothers with SCI (particularly high-level SCI) may have increased risk of PPD and PPA. PPD is poorly understood in women with SCI and may even be underdiagnosed. SCI-related risk factors for PPD and PPA should be explored.

Conception and development of Sexual Health indicators to advance the quality of spinal cord injury rehabilitation: SCI-High Project.

Context: Although spinal cord injury or disease (SCI/D) results in complex biological and psychosocial impairments that adversely impact an individual's overall quality of sexual life, sexual health is poorly integrated into the current rehabilitation processes. Therefore, it is vital to promote sexual health as a rehabilitation priority. Herein, we describe the selection of Sexual Health structure, process and outcome indicators for adults with SCI/D in the first 18 months after rehabilitation admission. Methods: Experts in sexual health and the SCI-High team identified key factors that influence the sexual health outcomes of rehabilitation interventions to inform Driver diagram development. This diagram informed the selection and development of indicators to promote a permissive environment for discussion of sexual health issues among regulated health care professionals (HCPs). A review of literature and psychometric properties of measurement tools facilitated final indicators selection. Results: The structure indicator is the proportion of rehabilitation HCPs who have completed annual preliminary sexual health training. The process indicator is the proportion of SCI/D inpatients that have a documented introduction to available local sexual health resources. The outcome indicator is a sexual health patient questionnaire used to assess sexual health patient outcomes and sexual health information/educational needs. Rapid-cycle piloting verified that the indicator tools developed are feasible for implementation. Conclusion: Successful implementation of the Sexual Health structure, process and outcome indicators will promote a permissive environment to enable open discussion, and lead to provision of equitable and optimal care related to sexual health following SCI/D. This will ultimately advance sexual health rehabilitation across the nation.

Breastfeeding Before and After Spinal Cord Injury: A Case Report of a Mother With C6 Tetraplegia.

INTRODUCTION: Although lactation dysfunction and breastfeeding difficulties after spinal cord injury have been previously reported, there is still a lack of research on the specific challenges and aspects that require more support. This unique case of a mother with C6 tetraplegia details her breastfeeding experience before and after spinal cord injury. MAIN ISSUE: A 23-year-old woman with a 20-month-old daughter sustained a motor and sensory complete traumatic spinal cord injury in a motor-vehicle crash while she was 6 months pregnant with her second child. This resulted in complete absence of sensory function below the level of injury (including the breast) and limited hand function. In comparison with her breastfeeding experience before injury, after injury she experienced decreased milk production, absence of the milk ejection reflex, and impaired ability to pick up, hold, and position her infant. MANAGEMENT: Care aides and family members assisted this mother with picking up, positioning, and latching her infant. She also utilized alternative breastfeeding positions, nursing pillows, and wedges. Domperidone was suggested by her physiatrist to increase milk production but ultimately was not used as there were no concerns with her infant's growth or development. CONCLUSION: Breastfeeding as a recently injured mother while undergoing intensive post-injury rehabilitation was challenging. Her second child developed well and was breastfed for 3 months compared to her first child (9 months). Breastfeeding was possible for this mother after spinal cord injury, in part due to previous experience successfully breastfeeding her first child, assistance from care personnel, and nursing aids.

The Influence of Spinal Cord Injury on Breastfeeding Ability and Behavior.

BACKGROUND: Lactation dysfunction following spinal cord injury has been noted in the literature. However, researchers have often grouped together all women of physical disability or do not account for injury level. The extent of lactation dysfunction and influence of spinal cord injury on breastfeeding ability and behavior is not well understood. Research aim: This study aimed to identify major barriers to lactation and breastfeeding related to spinal cord injury, specifically comparing high- and low-level injuries. METHODS: A retrospective cross-sectional survey design was used. Two online questionnaires were developed and completed by women ( N = 52) who chose to breastfeed with spinal cord injury, primarily in Canada and Sweden. RESULTS: The first questionnaire was completed by 52 women with spinal cord injury; 38 of the original 52 participants completed the second questionnaire. Of the 52 women, 28 (53.8%) had high-level spinal cord injury (at or above T6) and 24 (46.1%) had low-level injury (below T6). On the second questionnaire, 14 (77.8%) women with high-level injury reported insufficient milk production or ejection. Only 35% of women ( n = 7) with low-level injury reported the same. Autonomic dysreflexia was experienced by 38.9% of women ( n = 7) with high-level injury. Exclusive breastfeeding duration was significantly shorter ( p < .05) in the high-level injury group (3.3 months) compared with women with low-level injury (6.5 months). CONCLUSION: These results further support the notion that spinal cord injury (particularly at or above T6) disrupts lactation and is associated with shorter breastfeeding duration. Autonomic dysreflexia should be addressed in prospective mothers with high-level spinal cord injury.

Transient Hypertension after Spinal Cord Injury Leads to Cerebrovascular Endothelial Dysfunction and Fibrosis.

We aimed to create a clinically relevant pre-clinical model of transient hypertension, and then evaluate the pathophysiological cerebrovascular processes resulting from this novel stimulus, which has recently been epidemiologically linked to cerebrovascular disease. We first developed a clinically relevant model of transient hypertension, secondary to induced autonomic dysreflexia after spinal cord injury and demonstrated that in both patients and rats, this stimulus leads to drastic acute cerebral hyperperfusion. For this, iatrogenic urodynamic filling/penile vibrostimulation was completed while measuring beat-by-beat blood pressure and cerebral blood flow (CBF) in patients. We then developed a rodent model mimicking the clinical reality by performing colorectal distention (to induce autonomic dysreflexia) using pre-clinical beat-by-beat blood pressure and CBF assessments. We then performed colorectal distension in rats for four weeks (6x/day) to evaluate the long-term cerebrovascular consequences of transient hypertension. Outcome measures included middle cerebral artery endothelial function, remodeling, profibrosis and perivascular innervation; measured via pressure myography, immunohistochemistry, molecular biology, and magnetic resonance imaging. Our model demonstrates that chronic repetitive cerebral hyperperfusion secondary to transient hypertension because of autonomic dysreflexia: (1) impairs cerebrovascular endothelial function; (2) leads to profibrotic cerebrovascular stiffening characterized by reduced distensibility and increased collagen deposition; and (3) reduces perivascular sympathetic cerebrovascular innervation. These changes did not occur concurrent to hallmark cerebrovascular changes from chronic steady-state hypertension, such as hypertrophic inward remodeling, or reduced CBF. Chronic exposure to repetitive transient hypertension after spinal cord injury leads to diverse cerebrovascular impairment that appears to be unique pathophysiology compared with steady-state hypertension in non-spinal cord injured models.

A Multidisciplinary Approach to Sexual and Fertility Rehabilitation: The Sexual Rehabilitation Framework.

Many studies have identified improvement in sexual function as a priority for persons with spinal cord injury (SCI). Due to the various secondary sensory, motor, and autonomic consequences following SCI and due to the complexity of sexuality per se, this area can be overwhelming to many health care professionals. The literature indicate that sexual and fertility rehabilitation must be addressed in a biopsychosocial manner and include various disciplines. The multidisciplinary utilization of a Sexual Rehabilitation Framework (SRF) allows the medical and/or psychosocial factors that impede or improve sexual and reproductive function to be examined. The SRF is a user-friendly and simplified way to proactively address the major biopsychosocial areas of sexuality and to create a plan of action for the person with SCI. It is an adjunct tool to the full sexual history, and it encourages all disciplines involved in SCI rehabilitation to address the issue of sexual function in the same manner as they would other activities of daily living. Eight areas are included in the SRF: sexual drive/interest, sexual functioning, fertility and contraception, factors associated with the condition, motor and sensory influences, bladder and bowel influences, sexual self-view and self-esteem, and partnership issues. The use of the SRF is encouraged in both inpatient and outpatient settings. Multidisciplinary or interdisciplinary team work is encouraged in sexual and fertility rehabilitation to move clinicians toward providing proactive and comprehensive care for individuals with SCI or other chronic disabilities.

Perinatal Care for Women with Spinal Cord Injuries: A Collaborative Workshop for Consensus on Care in Canada.

Background: In North America, there are currently no clearly defined standards of care for women with spinal cord injury (SCI) during the perinatal periods of preconception, pregnancy, labour/delivery, and postpartum. Women with SCI and their partners say resources specific to their needs are hard to find. Little evidence-informed research exists to guide clinicians in the care of women with SCI during pregnancy. Objectives: To further explore these gaps in knowledge and practices for perinatal care for women with SCI, a 1-day workshop was held in Vancouver, British Columbia (BC), Canada in November 2013. Methods: Twenty-nine attendees included women with SCI, SCI-community service providers, researchers, and health care providers from maternal/fetal medicine, rehabilitation, anesthesiology, and psychiatry. A pre-meeting online survey of stakeholders elucidated 3 themes: lack of knowledge for both consumers and care providers, gaps in access to services and information, and a need for collaboration throughout the perinatal journey. The workshop addressed issues of care providers' lack of knowledge of nonmedical issues during the perinatal period, physical and attitudinal barriers to access to care for women with SCI, and the need for better collaboration and communication between care providers, the latter potentially initiated by providing information to care providers through the women with SCI themselves. Results: Content experts attending the workshop collectively made recommendations for knowledge generation and research priorities, clinical application priorities, and the need for policy and guideline development in this field. Conclusion: Two information sources for women have since been developed and are available online.

The development of a sensory substitution system for the sexual rehabilitation of men with chronic spinal cord injury.

INTRODUCTION: Sexual health is often severely impacted after spinal cord injury (SCI). Current research has primarily addressed male erection and fertility, when in fact pleasure and orgasm are top priorities for functional recovery. Sensory substitution technology operates by communicating input from a lost sensory pathway to another intact sensory modality. It was hypothesized that through training and neuroplasticity, mapped tongue sensations would be interpreted as sensory perceptions arising from insensate genitalia, and improve the sexual experience. AIM: To report the development of a sensory substitution system for the sexual rehabilitation of men with chronic SCI. METHODS: Subjects performed sexual self-stimulation while using a novel sensory substitution device that mapped the stroking motion of the hand to a congruous flow of electrocutaneous sensations on the tongue. MAIN OUTCOME MEASURES: Three questionnaires, along with structured interviews, were used to rate the perceived sexual sensations following each training session. RESULTS: Subjects completed 20 sessions over approximately 8 weeks of training. Each subject reported an increased level of sexual pleasure soon after training with the device. Each subject also reported specific perceptions of cutaneous-like sensations below their lesion that matched their hand motion. Later sessions, while remaining pleasurable and interesting, were inconsistent, and no subject reported an orgasmic feeling during a session. The subjects were all interested in continuing training with the device at home, if possible, in the future. CONCLUSIONS: This study is the first to show that sensory substitution is a possible therapeutic avenue for sexual rehabilitation in people lacking normal genital sexual sensations. However more research, for instance on frequency and duration of training, is needed in order to induce functional lasting neuroplasticity. In the near term, SCI rehabilitation should more fully address sexuality and the role of neuroplasticity for promoting the maximal potential for sexual pleasure and orgasm.