As part of Baby Lifeline Training’s recent course. Improving Outcomes for Those with Comorbidities in Pregnancy, we were honoured to welcome Ngawai Moss, a member of Baby Lifeline’s Family Voices Group. Ngawai shared her lived experience of navigating pregnancy with epilepsy, and the work she now does to improve care for women and birthing people with comorbidities.
On Epilepsy Awareness Day (26th May), we’re sharing highlights from her session to raise awareness of the unique challenges faced during pregnancy when living with other health conditions, and how Healthcare Professionals can offer better support.
Remember: She’s Not Just Navigating Pregnancy
“When you’re pregnant with a comorbidity, you’re not just navigating pregnancy. You’re sometimes making decisions that may have lifelong consequences for your health and that of your baby.” Ngawai opened her talk by sharing her digital story (linked at the bottom of this page!), setting the tone for an honest and powerful discussion about risk, autonomy, and support.
Pregnancy in the context of a long-term health condition often means engaging with a healthcare system that isn’t always designed to offer holistic, joined-up care. It also means carrying the mental load of not just being a patient, but an advocate for your own health and wellbeing.
Healthcare professionals have a key role to play in shaping that journey. Listening, validating, and providing clear, evidence-based information can make all the difference.
Understanding the Challenges
Ngawai highlighted several key challenges for pregnant women living with a comorbidity:
Risk framing: Often, emphasis is placed solely on risks to the baby. While this is important, maternal health must be equally prioritised.
Medication decisions: Women frequently carry the burden of complex decisions about medication safety, long-term risks, and treatment adjustments. These decisions can be emotionally taxing.
Fear and uncertainty: For someone with epilepsy, the fear of seizures is ever-present. “Would I have a seizure while driving? Can I safely care for my child?”
Fragmented care: Midwives and obstetricians are pregnancy specialists, but often aren’t equipped with expertise in long-term conditions. This can lead to disconnected care where women repeatedly have to explain their health history.
Risk Framing and the Power of Patient Education
Ngawai stressed the value of supporting women and birthing people to understand what lies ahead, to feel empowered to take an active role in their care, and encouraging them to advocate for themselves. “Even if someone can’t speak up in the moment, simply validating their feelings and giving them permission to ask questions makes a difference.”
Importantly, communicating the benefits of treatment – not just risks – and reinforcing that the woman’s health matters just as much as the baby’s, helps women to feel more informed, more confident, and less burdened by their choices.
Partner Involvement
The role of partners and families in supporting women with complex health needs is often overlooked. They are not passive observers, they are part of the care journey. They may also need guidance, reassurance, and support.
Recognising the partner’s role, particularly when they are also acting as a carer, is essential.
Planning for the Postpartum Period
The period after birth often brings new challenges. Medication plans may need reviewing, treatments adjusted, and mental health risks anticipated. Disrupted sleep and physical recovery can affect a woman’s ability to manage her condition. Planning ahead during pregnancy helps ensure women can continue managing their health effectively in the early weeks and months after birth.
Breastfeeding and Medication
Many women assume they can’t breastfeed due to medication, but in many cases, they can! Ngawai highlighted that hearing this clearly during pregnancy can be reassuring, especially as it might not occur to them to ask. A simple, informed “yes, you can” can offer certainty and empower those who are unsure.
UKTIS – Evidence-based safety information about medication, vaccine, chemical and radiological exposures in pregnancy is an excellent resource for Healthcare Professionals looking for information about medications, vaccines and radiation during pregnancy; and Bumps – Best use of medicines in pregnancy provides freely available, reliable, evidenced-based and accurate information to help women make decisions regarding use of medicines in pregnancy that are best for both mother and baby.
Why This Matters
Ngawai closed with a powerful reminder: ” Living with a comorbidity shouldn’t eclipse the hope, joy, and excitement of having a baby. Women deserve to feel supported, and their experience should not be overshadowed by risk as they prepare to welcome new life.”
For more information about our training courses, visit Baby Lifeline Training.