Victoria Bradley is a nurse practitioner, freelance writer, and new mother living with multiple sclerosis (MS). In this personal story, she shares her journey through conception, pregnancy, and early parenting, highlighting the unique challenges and triumphs of motherhood with MS.
I’d always thought I’d have a baby and imagined myself being a mother from a young age. However, I didn’t foresee that I would be living with a long-term disabling condition when the time came, that I would be considered a “higher risk” pregnancy, or that I’d be navigating any other decisions than the standard parent-to-be.
Preconception planning: weighing risks and rewriting expectations of motherhood with MS
Deciding exactly how and when to try and have a baby required more planning for me. It wasn’t something I could be spontaneous about.
At the time, the medication I was using for multiple sclerosis was thought not to be safe for pregnancy, as a new medication with not much historical data.
Therefore, the advice was that anyone hoping to conceive needed to be off the medication for at least 12 months. This meant switching to a different, lower efficacy medication, a 3 times a week injectable that truly, became a dreaded ritual.
I’m a nurse, I don’t have an issue with needles, and I’m trained in injection techniques. I’ve given countless subcut injections straight into the fatty tissue. But due to the sheer frequency and length of time I was on the medication, I developed injection site reactions – painful lumps, redness, swelling, itching and bruising.
The medication itself also stung on administration, and I had many moments of wanting to quit it altogether. I also hated the logistics of travelling with injections, using a cooler thermos for flights and planning when I could get them in the fridge. It wasn’t unmanageable, but it was a reminder that I had a long-term condition, in a way that felt more tangible than ever before.
Pregnancy with MS: support, symptoms, and self-advocacy
Pregnancy is typically a very protective time for people with MS. Higher levels of hormones tend to suppress symptoms, and I found this true for myself. Due to my medical history, I was allocated to a case loading team, midwives who are trained to support women with long-term conditions. Everything I experienced felt very typical of a standard pregnancy. I had nausea, vomiting and food aversions in the early trimesters, palpitations, and heartburn as my pregnancy progressed.
Under a case loading team, I had more antenatal appointments than the average person, including appointments with various obstetric consultants with expertise in medicine and neurology.
I was also in regular contact with my MS nurse, and I was referred for an anaesthetic consultation, in case I needed surgical intervention during labour.
I had been advised by one of the obstetric consultants that I should not have a water birth in case it caused a sensory relapse, that could be dangerous if I was stuck in water, but other than that they felt I was fine to plan for a lower intervention labour on the midwifery led suite, and as far as possible I could try and choose what I wanted.
Whilst I felt my care was good, I am aware that as a healthcare professional, there is a certain level of advantage to be able to advocate for yourself, as someone who knows the system, knows some questions to ask and knows how to find information and resources that aren’t widely available. I can appreciate that, without this background, there may have been more barriers and I wouldn’t think to ask about what I didn’t know.
Birth beyond the plan: an unexpected caesarean experience
I had done a lot of labour preparation at home, perhaps somewhat naively, in anticipation that I would be able to control the progression and method of the birth of my baby.
I gave birth by emergency caesarean section, after my waters had broken and attempts to induce labour had failed. I went into hospital unwell with a cough and flu-like symptoms, which worsened over the course of my stay, and it was unclear whether or not I was becoming unwell due to sepsis, therefore, an emergency caesarean was recommended in the best interests of both myself and the baby.
I’d watched caesarean section operations as a student nurse and was familiar with the procedure, however, when it came to me being the patient, I was terrified. I hated the sensation of being completely numb from the waist down.
As someone with a neurological condition who had experienced limb weakness and sensory symptoms in the past, I found it quite triggering to now be unable to move or feel anything. I remember looking down and noticing they had repositioned my legs for the procedure, and it felt incredibly odd and a bit unsettling that I couldn’t feel that. There was a distinct feeling of relief when the sensation began to return to my legs post op.
Whilst I was frightened, the care I received was excellent. The staff were all very reassuring and tried to comfort me as much as possible. I also have a very supportive partner, who made me feel much safer at a time when I felt incredibly vulnerable.
Postpartum and beyond: managing fatigue, relapse risk, and systemic barriers
One of the biggest challenges I’ve navigated, and still do as a mother with MS, is fatigue. Often, it can feel like fatigue on top of fatigue, and it’s hard to pinpoint if it’s MS-related, due to being a new mother to a young baby, or a combination of both.
I was also worried about the possibility of experiencing a postpartum relapse. Whilst pregnancy is a protective time, once hormone levels drop postpartum, there is an increased risk of experiencing a relapse.
My MS team had proactively planned for this, and I was scheduled to be re-infused with my medication as soon as possible after giving birth.
However, the logistics of this were difficult. As I had been off the medication for longer than a year, I needed to have my infusion as a split dose, two weeks apart.
I was exclusively breastfeeding a newborn baby, and the hospital wouldn’t allow me to bring my baby into the infusion lounge, creating a barrier for me in accessing my medication.
I raised my concerns with my MS consultant that I wasn’t able to access my medication, and she contacted the department directly to request special permission for me to bring my child with me for my treatment. I was also granted permission to bring my mum to support with caring for my baby whilst I was hooked up to my medication and would likely experience infusion fatigue.
Navigating motherhood with MS has been challenging at times, and there have been extra considerations right from pre-conception. However, I am fortunate to say that the quality of the antenatal care I received was very good, and I felt I was able to access all the resources I needed to.
The barriers I faced postpartum were eventually resolved with input from my consultant, but it did feel frustrating that the barrier even existed in the first place, directly as a result of a very rigid system that didn’t seem to consider the people accessing it. If women are to be proactively recommenced on their medication postpartum as part of good practice, and there must be many others in similar situations, more flexibility is needed to ensure individuals can attend appointments and access their care.
Are you experiencing motherhood with MS or similar neurological conditions or disabilities? What has your Quality of maternity care been like? Let us know in the comments box, on social media or contact us to share your personal story.