By: Cristina Montoya

I grew up in Medellin, Colombia, where my single mother raised me in the midst of the most violent time of our history. My mother faced the difficult decision between spending time with me or working to provide for us. She never gave up on me, even though I had multiple health issues. She managed to juggle her full-time job and my multiple medical appointments until I was finally diagnosed with Rheumatoid Arthritis (RA) and Sjogren’s Syndrome in the early 2000s. My childhood experiences certainly made me hesitant to have children, worrying that they may suffer the same fate as me.

The rheumatologists in Colombia also advised me against having children. They suggested that stopping my RA meds would likely result in horrific pain and irreversible joint damage. Having children was not worth that kind of pain. Who wants to feel pain, right?

When I married my caring husband in Canada in 2007, he naturally expressed his desire to expand the family, but I immediately turned him down. I was too scared of experiencing more pain. Once again, my rheumatologist advised me against having children while my RA was still active without offering a second opinion or a referral to a specialized centre.

Ten years after we got married, I unexpectedly became pregnant at the age of 36. Although my rheumatoid arthritis was in remission, I was still taking a low dose of Methotrexate, corticosteroids, and a biologic. When we went to the walk-in clinic with the positive home pregnancy test result, the family physician suggested an abortive pill. However, I refused as I believed that my baby came into my life for a reason, and I wouldn’t give up on him. I contacted my rheumatologist, who referred me to a fertility specialist and rheumatologist who ironically happened to work across the street from his office.

The specialist explained that my Sjogren’s put me at a higher risk of having a baby with a congenital heart blockage. As a result, I was referred to the Sick Kids Hospital for a weekly fetal echocardiogram for four weeks. During these visits, at around 20 weeks pregnant, the fetal medicine doctor suggested terminating my pregnancy because my baby was showing signs of having only one kidney and possible spinal deformation. I couldn’t believe what I heard as my baby’s heart kept beating strongly, like it was telling me, “Mama, don’t listen to her; I want to meet you.” Fortunately, my baby showed no signs of heart blockage, so  I decided to carry on with my pregnancy.

Furthermore, my rheumatologist had warned me that I might experience an arthritis flare-up within eight to ten weeks after giving birth. However, it only took one day after delivering my baby for RA to attack me with full force, even though I had been taking a pregnancy-safe biologic and prednisone. RA showed no mercy, and my body hurt like a thousand needles wrapped in flames, poking me all over. It was the kind of pain that made me doubt my ability to perform as a new, first-time mom at 37 years old. I refused to take opioids because I wanted to be alert and able to care for my baby. The nurses did everything they could to help me nurse my baby, but we all failed miserably.

I tried my best to continue breastfeeding, but the pain was so intense that my cesarean incision felt like a mere paper cut in comparison. The staff at the maternity ward were highly attentive towards my newborn and helped me with my new-mom checklists. Unfortunately, the healthcare team completely disregarded the excruciating pain that I was suffering from RA. As a result, my condition worsened, leading to heart failure and pulmonary edema. This required another hospitalization away from my newborn.

During that period, I came across my current rheumatologist, who was pregnant. Her kind and non-judgmental manner helped ease my anxiety and made it possible for me to have the most difficult conversation of all – choosing between a new treatment for my RA or stopping breastfeeding altogether. She was honest and explained to me that the biological therapy had stopped working and that I needed a boost with Methotrexate. Additionally, prolactin, one of the hormones that stimulate milk production, can cause more inflammation which worsens the RA symptoms. Methotrexate, however, is not allowed to be used during pregnancy and breastfeeding. I cried and cried the burning tears that only come with Sjögren’s Disease.

I felt a sense of hopelessness and desperation that had taken over me completely. My rheumatologist advised that breastfeeding was important, but it wasn’t the only thing I had to do to take care of my newborn. I had to change the baby’s clothes and diapers, hold him, bathe him, put him in and out of the car seat, push the stroller, and do many other simple things that required all the energy I had left after going through a traumatic postpartum experience.

I felt utterly disheartened when my status changed from being a closely monitored “high-risk” mom during my pregnancy to being left alone after delivering my baby. I felt like a “nobody” in the healthcare system. I had poor access to physical and emotional support on how to care for my baby while also living with chronic pain and rheumatic diseases. It took five long years to put my RA in remission again.

My son was born with one kidney and a hemivertebrae. While I was pregnant, I participated in a mother-to-baby research program. Several tests showed that my son’s spinal structure anomaly and missing kidney were not related to my health condition or medications. He is now a healthy five-year-old who has brought so much joy into our lives. However, I wish I had received better perinatal support to help me manage my rheumatological condition during and after my pregnancy.

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