When Karen Hodge decided to start a family in 2009, like many women, she had a lot of questions about becoming a mother—her first question was, “Is pregnancy even possible for me?”
Hodge, who developed a permanent SCI as the result of abnormal blood vessels in her spinal column at the age of 15, knew little about pregnancy or breastfeeding after SCI in those early days of contemplating family life. Now, more than 15 years later, she is a busy mother of two and a passionate advocate for care of expecting and new mothers with SCI, all on top of a fulfilling career as a social worker.
One topic the Lower Mainland BC resident has been especially passionate about since her days as a new mom is lactation and breastfeeding. When she first became pregnant, she had a strong desire to breastfeed, in part due to the “breast is best” messaging that was consistently being promoted by experts, health care providers, and the mainstream media, but she was met with several challenges on her breastfeeding journey.
“When I was hoping to get pregnant, there was very little information about pregnancy or breastfeeding after SCI available online or even in the health care realm,” she explains.
Recognizing that other women with SCI may be facing the same challenges or limited access to resources on their own motherhood journeys, Hodge took action. “I reached out to a group of providers I had met and found helpful during my first pregnancy and asked if there was a way we could work together to make information more readily accessible to persons exploring their pregnancy options and to their health care providers,” she says.
Together, they created the SCI Pregnancy and Perinatal Interest Group—a group of health care professionals, researchers, and SCI support groups, including SCI BC, working together to raise awareness, create resources, and educate people with SCI and health care providers on the topic of pregnancy, lactation, parenthood, and women’s health after SCI.
The group’s most recent contribution—led by Dr. Andrei Krassioukov, a physiatrist and scientist at the International Collaboration on Repair Discoveries (ICORD), GF Strong Rehabilitation Centre, and the University of British Columbia—is the publication of new clinical practice guidelines for health care professionals who work with expecting and new mothers with SCI. Complemented by a plain-language consumer guide for mothers with SCI, the guidelines provide evidence-based recommendations for breastfeeding after SCI.
Why Breast Might Not Always Be Best
After giving birth to her first child, a son, in 2009, Hodge was encouraged to breastfeed.
“I met with health care providers and a lactation consultant prior to discharge and was told repeatedly that there was no reason why I could not breastfeed,” says Hodge in a video describing her postpartum experience.
But when she got home, she struggled to make it work. Her son was losing weight even though she was frequently placing him at her breast to feed. She was also experiencing regular episodes of autonomic dysreflexia (AD) when attempting to breastfeed, which many of our readers will recognize as uncontrolled spikes in blood pressure caused by painful or non-painful below the level of injury.
“I don’t have sensation in my nipples, so I couldn’t tell when he had a good latch and when he didn’t. My nipples quickly became bruised and then cracked and damaged,” she explains in the video.
Despite these challenges, what Hodge took away from early conversations with her family doctor was that breastfeeding was best for her child, and she needed to try to find a way to make it work.
“Looking back, I think very likely [my family doctor] was also at an almost total loss as to what information to provide or how best to help. There was little information available to her, there were no clear answers in the literature or online about breastfeeding after SCI,” says Hodge. “In many ways, we both felt it was important to keep trying to breastfeed as so much of our culture currently says breastfeeding is key to health. I desperately wanted to breastfeed even though it was clear it wasn’t working. Both my child and I were struggling, physically and emotionally.”
She eventually needed to introduce formula feeding due to her son’s weight loss, but she continued to place him at her breast, to pump, and to hand express with each feed with little to no breastmilk occurring despite these consistent efforts. “It was totally exhausting,” she says, reflecting on the experience.
While the SCI Pregnancy and Perinatal Interest Group has created several pregnancy-focused resources over the years, Hodge’s experience with breastfeeding highlights an important gap in information focused on lactation and other postpartum considerations—a gap that had also been identified through survey research focused on women’s experiences of motherhood after SCI. The new clinical practice guidelines and consumer guide focused on breastfeeding with SCI are intended to fill that gap.
“The guidelines for breastfeeding stem from another project, initially looking at women with SCI in pregnancy. From this project it became apparent that more specific information was needed for women with SCI on their breastfeeding journey. Mothers expressed feeling the ‘breast is best’ pressure to breastfeed, and were struggling when things weren’t working. There was very little support for these women from their primary care providers as they were often told to keep trying,” explains Shea Hocaloski, a Registered Nurse and Sexual Health Clinician with the Sexual Health Rehabilitation Service at the Blusson Spinal Cord Centre. Hocaloski is a member of the SCI Pregnancy and Perinatal Interest Group and a co-author of the guidelines. “From this, our team realized we needed to develop guidelines for health care professionals.”
Impacts of SCI on Breastfeeding
The World Health Organization (WHO) recommends that children be breastfed exclusively for the first six months of age—and for good reason. Breastmilk provides an ideal (and free) source of nutrition for infants, as well as antibodies that help to protect against illness while a baby’s immune system develops. Breastfeeding is also convenient, supports bonding, and lowers the mother’s risk of breast and ovarian cancers in the future.
Many women with SCI are capable of breastfeeding, and face many of the same challenges as women without SCI. For example, the child may have difficulty latching due to a lip or tongue tie (a band of tissue underneath the infant’s lip or tongue that can limit movement), or the mother may experience clogged ducts or inflammation in the breast tissue that causes pain and limits the flow of breastmilk. However, women with SCI also face unique challenges that may impact their ability to breastfeed.
Because the nerves that allow communication between the spinal cord and the breasts are located between the first and fifth thoracic vertebrae (T1-T5), women with injuries above T5 may experience decreased (or loss of) nipple sensation and an impaired “let down” reflex—a physiological response that allows milk to flow out of the breast to the baby. These challenges are impacted by not only the level of injury, but the completeness of the injury as well.
In addition, about one-quarter of women with SCI, and up to 40% of women with cervical SCI, may also experience AD while breastfeeding—a sudden increase in blood pressure that may be accompanied by a headache, sweating, and flushed skin above the level of injury. AD typically occurs in people with SCI at or above T6 but has been seen in injuries above T10. AD during breastfeeding can result from the process of breastfeeding itself, or from other painful processes initiated through the breast (such as cracked nipples or clogged ducts), and can lead to potentially life-threatening consequences, such as seizures and stroke, if uncontrolled.
People with SCI can also experience periods of low blood pressure, which can impact the length of time a mother can hold and breastfeed her child before experiencing fatigue or possibly fainting. Another issue is that women with injuries above T1 may find it difficult to position their baby for breastfeeding due to reduced motor function in the arms and hands.
“So, the biggest question is typically whether or not [the woman with SCI] can breastfeed,” says Hocaloski. “And our advice is typically to just give it a try… If it doesn’t work for you, it doesn’t mean that you are doing it wrong or that you are failing in any way. One of the beautiful parts about being able to breastfeed is the bonding, and there’s still lots of ways to do that through skin-to-skin contact even if breastfeeding isn’t accessible to you.”
The Clinical Practice Guidelines for Breastfeeding with SCI
The clinical practice guidelines were developed by a BC-led international team of health care providers, SCI researchers, and women with SCI, including Hodge and Hocaloski. They provide evidence-based recommendations for health care professionals—including but not limited to general practitioners, obstetricians, pediatricians, physiatrists, lactation consultants, nurses, midwives, occupational therapists, and physiotherapists—who work with expecting and new mothers with SCI.
The process for developing the guidelines began with an international survey of 52 mothers with SCI. With funding from the Craig H. Neilsen Foundation, the survey was later expanded to include 102 mothers with SCI and their breastfeeding experience. The surveys focused on identifying the women’s biggest challenges and concerns related to breastfeeding. At the same time, the research team conducted an environmental scan to evaluate the extent to which existing postpartum guidelines could be applied to breastfeeding after SCI.
The guidelines were developed from the survey findings, gaps in the scientific literature, consultants’ input, and results of the environmental scan, then reviewed by independent experts. Throughout this process, the benefits of breastfeeding were evaluated against the potential health risks specific to SCI. The guidelines will be reevaluated and updated every five years based on new research and experience.
The recently published guidelines cover six topics related to breastfeeding after SCI:
1. Lactation and breastfeeding: Information about the impact of SCI on lactation and breastfeeding, the need for early identification of breastfeeding challenges, aids for milk production, and individualized care.
2. Mobility and activities of daily living: Information about how to position infants for good latching and aids that can be used when mobility is limited, as well as considerations for the mother’s self-care routine and community accessibility.
3. Autonomic dysreflexia: Information about the prevalence and potential harms of AD while breastfeeding. This section calls out the limited availability of research to guide the management of AD in women with SCI who are breastfeeding.
4. Interdisciplinary knowledge and collaboration: Information about the importance of interdisciplinary care teams, who they should include, and what types of knowledge they should have.
5. Community support: Information focused on ensuring that breastfeeding mothers with SCI can live and access resources in their home communities, including accessible housing and transportation, as well as health care facilities and play spaces for children.
6. Psychosocial health: Information about the emotional highs and lows women may experience following childbirth and when attempting to breastfeed, infant bonding and attachment, fatigue and adjustments to parenthood, and risk for postpartum anxiety and depression.
In general, the recommendations in the guidelines are focused on patient counselling and education, anticipating and addressing breastfeeding challenges, and developing an interdisciplinary care plan with relevant health care professionals.
For Hodge, the guidelines are a game changer. “As a mom who very much tried everything in my power to breastfeed both of my children but with very little success, I felt so alone in my experience and like a failure both when I sought out support at the time and even when talking about it many years later. No one had any concrete answers to my questions and most friends and health care providers were at a loss as to how best to offer support,” she explains. “I am hopeful that these guidelines will provide an easy-to-find, go-to resource for health care providers… that will help to improve the quality of care that [women with SCI] receive.”
Hocaloski agrees. “I’m pretty excited that [the guidelines] are out in the world now. It took many years of collaborative work, and it is a big step forward in improving care for mothers with SCI,” she says.
The Consumer Guide for Mothers with SCI
Another important step in the development of the guidelines was the creation of a consumer guide for women with SCI who are planning on or currently breastfeeding. The plain language guide outlines the most common issues women with SCI experience during breastfeeding—from positioning, latching and milk supply to medications, mental health, and AD—while offering practical suggestions, recommendations, and resources to address them.
“We have the guidelines that are for medical professionals, but we’ve also done a supplementary guide for women because they are the ones typically looking for the information,” says Hocaloski. “So, the idea is that we have these two companion pieces where women can get the information that they are looking for that is already researched and backed up by science, and their health care professionals have a resource to use to better support mothers with SCI.”
The consumer guide is intended to empower women who are considering pregnancy, are pregnant, or are new parents with information about breastfeeding after SCI and the options available to support them.
“I think equipping mothers with SCI with knowledge is really important,” says Hocaloski. “If mothers are aware of what experiences are common or may be expected then this can limit the pressure or anxiety they may feel if they face these challenges. Becoming a new mother is both exciting and nerve-wracking. There are a lot of ‘what if’s,’ so to be equipped with information that you can quickly look up and say, ‘Okay, this is common, this is what I can do, or this is who I should speak to’—this can help reduce a mother’s anxiety and help them to feel less alone.”
Hodge offers a similar sentiment, “I am hopeful that these guidelines will…help raise awareness of the possibility that there might be challenges and breastfeeding might not always work out exactly as planned, but that support is available and that it is okay and actually really helpful to tell others when challenges arise.”
Planning for parenthood after SCI
Becoming a parent can be a time of intense joy, wonder, and gratitude paired with uncertainty, exhaustion, and frustration. New babies require around the clock attention and care. And for parents with SCI, the demands of a frequent daytime and nighttime feeds may add new challenges in addition to the time and energy routinely spent on personal care and other daily tasks. Planning ahead to anticipate possible challenges and the supports you might need throughout pregnancy and the postpartum period is a critical step to set yourself, and your baby, up for success in the early days.
“Have conversations with your partner, your support network, and your care providers during your pregnancy about your hopes, your wishes, and your plans, but also have discussions about what will be the initial clues and potential next steps if things aren’t working out,” suggests Hodge. “In my experience, there was a lot of planning for what needed to be in place during pregnancy, but less planning for where to seek out support once the baby arrived and we had returned home.”
For some people with SCI, parenthood can also involve the added pressure of feeling like you need to ‘prove yourself’ as a capable parent. These feelings can add to the overwhelming mix of fatigue and emotions that every parent experiences, and even prevent some parents from seeking the help they need.
“Even as a trained counsellor, I did not recognize for a long time that I was experiencing postpartum anxiety and depression. I was so in the thick of things that I couldn’t see my way through the fog. I was so exhausted and busy with baby care and my own personal care, that I didn’t reach out to friends… and I became quite isolated,” reflects Hodge on her own experience after the birth of her first child. “I so wanted to prove to everyone that I could do this and do it well. I didn’t initially realize that my level of daily worry and fear… was significant anxiety that was negatively impacting my daily life and not just normal ‘new mom’ worries.”
Women with SCI are at higher risk for postpartum depression and anxiety, and it’s important for new mothers and the people around them to recognize when feelings of sadness, worry, or fear extend beyond the typical ‘baby blues’ that last for a few days or up to a week or two. Feeling sad, down, or crying easily, or feeling worried, agitated, anxious, or an overwhelming fear that something awful is about to happen, for more than a couple of weeks—especially if these feelings are impacting your ability to participate in day-to-day activities (such as caring for yourself and your baby)—are signs that you or someone you love may be experiencing postpartum depression or anxiety. Seeking help from a network of supportive people, including loved ones and care providers, and turning to resources like the clinical practice guidelines and consumer guide for mothers on breastfeeding after SCI, can be helpful tools to manage difficult feelings and ease the transition to motherhood.
“You have the capacity to be a great parent, and breastfeeding may be a possibility but it is also totally okay to reach out for support along the way,” says Hodge. “It is my heartfelt hope that the breastfeeding after SCI clinical and consumer guidelines will now be easy to find, easy to read, and will provide parents and health care providers with the information they are seeking to help guide and support them on this journey into parenthood.”
Where to Learn More
You can read and download the clinical practice guidelines online at:
doi.org/10.46292/sci23-00079
You can read and download the consumer guide for mothers online at: community.scireproject.com/topic/breastfeeding
More resources on pregnancy, parenting and sexual health after SCI are available through SCI BC at scisexualhealth.ca and the SCIRE Project at scireproject.com under “Sexual and Reproductive Health.
This article was originally published in the Spring 2025 issue of The Spin. Read more stories from this issue, including:
- Ferry accessibility
- Disability worker rights
- Next gen clinical trials
And more!
