My name is Stephanie Bacchus and I am a 34 year old daughter, mother, and wife. I have worked with children with special needs for 10 plus years as an Educational Assistant and I recently have been hired as a teacher. I have always loved working with children, especially children with special needs and I believe it maybe because I too can relate to some extent what it is like to live with a disability.
I was diagnosed with Juvenile Rheumatoid Arthritis (JRA) at the age of 13 where I experienced an extensive amount of stiffness in the mornings, pain in my knees which then spread to my wrists and fingers; my mom began to complete her research and then that was when she decided to take me to SickKids Hospital. I received wonderful care from the Rheumatology team there and was able to learn how to live with JRA. Once I turned 18 years old, I was transferred to St. Michael’s Hospital and was cared for by the doctor there who guided me in future planning for marriage, pregnancy, and pain management and medications.
The thought of pregnancy was something I thought about but it wasn’t something I worried about until I was married at 24 years old. When my husband and I reached our third year of marriage, we mutually decided that it was time to try for a family. Aside from worrying about the whole fertility process itself, I had worries about the medicines I was on, the pain I may or may not be in during pregnancy, and then the health of the baby itself. In October of 2017, I spoke with my rheumatologist and began planning for pregnancy. At the time I was taking rituxan as the drug that helped my RA pains once a year and I was due for another infusion that month. However my doctor said that now was the time to try for pregnancy because my body was cleansed of any medicine that could affect the baby. Thankfully, fertility played on our side and we were blessed to be pregnant with a baby girl in January 2018.
When I had gone through the normal pregnancy symptoms of morning sickness, I thought that I was in the clear. Little did I know that my body would reject remission during pregnancy and slowly I was experiencing stiffness and joint pain. As the weeks progressed, pain increased, stiffness increased, inflammation levels were high. My doctor recommended that I begin a low dosage of prednisone and I became worried that it would affect my daughter. I prolonged my decision well into my second trimester because of my fear of taking medication while pregnant. I knew I had to make the difficult decision when I started to use a cane to help support my walking at work while growing a human inside of me. So I put my pride aside and began taking prednisone to help alleviate the pain I was feeling while pregnant. Once that started, I felt so much better and my pain was well managed for the remainder of my pregnancy. When it was time to deliver the baby, my doctor mentioned that usually this was a time where remission was high postpartum and that I would be able to perhaps breast feed while still on the prednisone.
Once I was home with my baby girl, remission never happened and I was now postpartum and recovering from labour but also managing the severe RA pain. As soon as I spoke to my doctor, we then decided to begin the rituxan once again and begin to lower the prednisone dose that was increased postpartum. My daughter was my most wonderful blessing because she was born with no complications, no physical effects from the medication I was taking and she was not once affected by the prednisone I had to take for the remainder of the pregnancy.
Three years later, we decide to try to get pregnant again, it is May 2021 and I was due for another rituxan infusion but when I mentioned that we plan for one more baby, my doctor said
to not go back on Rituxan but rather try Cimzia as a medication for RA that was safe for pregnancy and that it would be safe to start trying. In August 2021, we found out we were pregnant with our second baby but this experience was unforgettable. In October of that year, my eyes were both red, my right eye always hurt, and then my joint pain slowly started to creep in. As the year progressed, my body began to react in ways it never has before. In December 2021, I had a horrendous pain that had me bent over for hours. When I had gone to the hospital, I found out I had gallstones and needed my gallbladder removed. It probably wasn’t correlated to my RA but it was something that caused my whole body to just feel like it was shutting down on me.
Once I had surgery five months pregnant, I went to see an opthamologist for my eyes as there was no change in the pain or redness. I found out that I had uveitis and scleritis in my eyes. I had to increase my prednisone dosage and begin an extensive eye drop treatment to treat the intense inflammation in my body. All the health issues that had occurred to me while pregnant caused depression during and after pregnancy: it took a very long time to feel like myself again. I was due to have my son in April but my water broke in March, a month earlier than anticipated. I was admitted that very night and put on antibiotics while the OB’s determined the next steps for the baby and I. The plan was to continue the prednisone and when they decided that it was time to deliver the baby, I was put on IV prednisone to continue the drug during labour and manage the inflammation.
With my son, he was born early and had to be in the NICU for a few days. As much as the nurses told me that it was not associated with the medicines I had to take, in my heart I always felt immense guilt that it was my fault. When we were home, I now had a 3 year old and a newborn to care for and my RA was out of control. As soon as I delivered, my doctors increased my prednisone to 40 mg in order to treat my inflammation all over my body including my eyes. When we tried to begin the rituxan again, the medicine no longer worked, we waited a couple months to see results and no changes had occurred; my eyes were still sore and inflamed, and my body was in immense pain. I was 8 months postpartum when we found a new medication called actemra which was used for RA but also for Covid symptoms. As soon as I had the transfusion, my inflammation levels went back down to normal, my eyes were no longer red and in pain, and I was able to be more mobile as I was before. The major negative for me however is that I continue to be on the prednisone and weaning off it slowly, I gained 40 pounds postpartum, and I suffered from postpartum depression after this pregnancy. The positive though, was seeing my baby boy healthy regardless of the outcomes that took place during pregnancy and when he was born.
I can’t say I enjoyed the pregnancy. I hated every second of it. All my health concerns that occurred was a constant reminder that RA and pregnancy is not something I want to experience again. It reminded me how awful this disease can be and how my body betrayed me.
The blessings I take from this are my two children, my daughter and son. They made me a mother, they made me stronger as a woman and they remind me that God has never abandoned me nor forsaken me. While both pregnancies brought their own separate stories, it combines into one lived experience of how women with RA have so much to face when planning for a baby, while pregnant and then this new life postpartum. No matter your story, know you are a strong woman and you are not alone!