I walked into the obstetrics unit – 36 weeks pregnant, out of breath and scared. I had been here before, but this time was different. My body was breaking down, and no one could tell me exactly why. I hadn’t slept in days. Each inhale came with a strange wheeze. I was terrified, but I also felt oddly calm. I had decided that the hospital was the safest place to be – for me, and for the baby I hadn’t met yet.
Let’s rewind a year, when my husband and I were planning for a second child. As someone living with juvenile rheumatoid arthritis (RA), this was a complicated decision. I had relied on medications to manage the condition since being diagnosed at 14. Even then, as a teenager, I wondered if I’d ever get to be a mother. Like many others, I didn’t want to take these drugs – but my immune system had other plans. RA is an autoimmune disease treated with powerful immunosuppressants to reduce inflammation, slow joint damage and ease pain and fatigue.
I couldn’t stop reading about the subject. Every night, I fell down rabbit holes of medical studies and pregnancy forums. Whatever I found, I brought to my rheumatologist and obstetricians, hoping to find clarity – but they didn’t know any more than I did. It was surprising and deeply disappointing. I felt abandoned by the very system that was supposed to protect me.
This gap exists because, as a society, we had been deeply and rightly scarred by the effects of thalidomide in the 1960s. In its wake, the medical establishment shifted toward “protecting” pregnant women and people – not by including them in research, but by excluding them from it entirely. That’s why there was no clear answer for me. I was trying to make a life altering decision in the dark.
I live in a time when there are efforts to be “natural” – as if our bodies will simply take care of themselves. But my body betrayed me many years ago, and these medications were the only way to live life and move forward. I went to university, worked full-time and built a life with my husband. Even with the most advanced treatments, daily life came with challenges and limitations. I couldn’t fully participate in life like my peers. I never spoke about it, nor asked for accommodations at work for fear of how others might react.
I became knowledgeable about my condition and took an active role in medical decisions, until I realized that, in many ways, I was entirely on my own.
Faced with uncertainty and recognizing the power of these immunosuppressant advanced therapies, I decided to stop taking my medications once I became pregnant with my second child.
I had stopped taking medications when I became pregnant with my first child, managing the pain, fatigue and disease that flared during pregnancy. I did not fare as well during the second.
And so, back in the hospital at 36 weeks pregnant, doctor after doctor came to see me hoping to get a day closer to a full-term pregnancy.
In the 24 hours before my son was born, I had to focus every moment on simply breathing.
I became increasingly breathless – so much so that, in the 24 hours before my son was born, I had to focus every moment on simply breathing. I wasn’t allowed to get out of bed for fear that my blood pressure would spike to dangerous levels. I stared at the clock on the wall, occasionally glancing at my husband, who watched my vital signs with quiet intensity. Breathe in, breathe out, I told myself. I thought of my son – how he had stopped growing inside me – and I breathed for both of us. The only option was to deliver him. But that decision would not be mine to make.
My last memory before losing consciousness was of my body shaking violently. It was 8:35 a.m. I reached out to my husband and told him to get the nurses and doctors. When I woke up, it was 4:10 p.m., and I was in the Intensive Care Unit. In a strange, suspended state, I tried to speak but couldn’t. I had been intubated.
As I looked down at my body, I saw an arterial line deeply embedded in my right hand and tubes going in every direction. I asked for a piece of paper and scrawled, “Where is my baby?” He had survived and was in the Neonatal Intensive Care Unit (NICU). He was doing well – but he hadn’t been breathing at all when he was born.
I met him sometime later, under the watchful eyes of the nurses. I wanted to hold him in my arms, to keep him close – but the sedatives coursing through my body made it hard to stay awake. A friend of mine, one of the ICU nurses, later told me how emotionally shaken the staff had been by the scene.
Later, I learned that all of this – the hospital stay, the trauma, the danger to both our lives – had been caused by stopping the powerful immunosuppressants I needed to manage my RA. I had been afraid to take them because no one could tell me if they were safe during pregnancy. The very medications that kept me well became a source of fear. I kept searching for answers no one seemed to have. I didn’t want to choose between my health and my baby’s safety. But that’s what it felt like I was being asked to do.
Each year, Mother’s Day arrives with a mix of joy and heartache. I celebrate my beautiful children and the strength it took to bring them into this world – but I also carry the weight of what it cost me to get here. For mothers like me, living with chronic illness and disability, pregnancy isn’t just a journey – it’s a high-stakes balancing act made even more perilous by the lack of research.
This day reminds me of love, yes – but also of impossible choices, invisible risks and the quiet resilience that so often goes unseen. I’m proud to be a mother. I just wish the path to motherhood didn’t have to be walked so alone.
