My disease remission ended as my journey into motherhood began

Retha De Wet enjoyed three happy years in remission from myasthenia gravis, during which time she gave birth to her daughter. But her symptoms have recently reemerged. (Courtesy of Retha De Wet)

This is Retha De Wet’s story:

I have always wanted to be a mother. I’ve always wanted a child of my own. However, when I was diagnosed with myasthenia gravis (MG) at the start of my 20s, that hope took a back seat to more pressing matters — like breathing and staying out of intensive care units.

The more treatments I went through to try to control my refractory symptoms, the less likely the thought of ever being a mom became. Unexpectedly, one medication I was on put me into remission. I savored every moment of it. I married my long-term boyfriend, relocated across continents, and gave birth to a beautiful daughter. Despite being in unmedicated remission for three marvelous years, MG still played a major part in my pregnancy, my daughter’s birth, and my journey into motherhood.

My pregnancy was classified as high risk because of the damage I sustained from harsh treatments like cyclophosphamide. The fact that I could even become pregnant after undergoing these treatments was a miracle in itself, and it meant more doctors’ appointments, specialized hospitals, and special considerations for where I was to give birth. It was recommended I give birth in a hospital with a neonatal intensive care unit (NICU), since babies born to mothers with MG can present with transient MG after birth, meaning I could pass antibodies on to her via my placenta.

‘My body could wait,’ but MG didn’t

The prospect of my newborn baby needing serious medical intervention because of me was too much to think about, so we played it safe and gave birth at a tertiary hospital. Our daughter was admitted to the NICU for three days of observation following her birth and luckily, she didn’t present with transient neonatal MG. Being a first-time mom and being separated from my perfectly healthy newborn, while experiencing the hormone hurricane that happens during postpartum was dreadful, however.

My perfect baby girl was born into the 99th percentile for height and weight, so my muscles struggled to keep up with the demands. Or maybe it was just that my symptoms had started to slide back into my life, and despite usually listening to my body, I tried to ignore it. I wanted to focus on my precious little girl. She was important. “My body could wait,” I thought.

That’s not how MG works, though and after three beautiful years of remission, I again have symptoms that warrant treatment. My daughter is a year old and still breastfeeding, but I will now have to fully wean her, because the treatments being recommended aren’t safe with breastfeeding.

I know 1-year-olds don’t rely on breastmilk as their primary source of nutrition, but having to end my breastfeeding journey hurts. It reinforces just how omnipresent MG is and has been in my life, and highlights how the disease can sneak up and take control.

In recognition of Myasthenia Gravis Awareness Month in June, the Myasthenia Gravis Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by myasthenia gravis, written in their own words. Follow us on Facebook, Instagram, or X for more stories like this, using the hashtag #MGSpotlight, or read the full series here.