Stop the guilt trip! Breast is not always best when living with inflammatory arthritis
Your baby looks so healthy! You must be breastfeeding. You are such a good mom. Congratulations! My smile dropped. Am I a bad mom because I am formula-feeding my baby? Why are women so hard on one another? Especially when it comes to pregnancy, breastfeeding, and parenting. This post will navigate the barriers, challenges, and opportunities related to formula-feeding when living with autoimmune inflammatory rheumatic diseases.
My biochemistry professor's voice still haunts me; she used to say that no matter the size of a woman's breast, we are biologically built to produce milk to feed our little ones. Her passion ignited in me an interest to participate in La Leche League and the Baby-friendly Hospital Initiative in Colombia to promote and support breastfeeding in health care facilities, and I swore to breastfeed my babies when the time came.
According to the World Health Organization: "Breastfeeding is an unequalled way of providing ideal food for the healthy growth and development of infants, and exclusive breastfeeding for six months is the optimal way o feeding infants. After that, infants should receive complementary foods with continued breastfeeding up to 2 years of age or beyond".
As a dietitian, I understand the many advantages of breastfeeding for both the baby and the mom, to name a few:
- it's environmentally friendly
- it's inexpensive (free)
- it's available 24/7
- promotes sensory and motor development
- protects against infections and viruses
- strengthen the infant's immune system
- helps for a quicker recovery after sickness
- contributes to mothers' health by reducing the risk of ovarian cancer and breast cancer
- promotes a special bond between mom and baby
Furthermore, in a systematic review and meta-analysis published in The Journal of Rheumatology in 2015, the researches found that breastfeeding is associated with a lower risk of developing Rheumatoid Arthritis. One more compelling reason to breastfeed my baby at any cost, but it was easier said than done.
Why was breastfeeding not best for my baby?
Warning: birth story rant ahead
My rheumatologist warned me an arthritis flare-up would happen at 8-10 weeks postpartum, so I thought that I had at least two months to feed the golden ambrosia to my baby. He will have a lower risk of developing infections, inflammatory and autoimmune diseases later in life. I believed that breastfeeding could prevent my baby from feeling the kind of pain I've been enduring for the past 20 years.
I wasn't that lucky, it only took one day after delivering my baby for the Rheumatoid Arthritis (RA) to attack me with full force, despite being on a biologic (Cimzia) and prednisone. RA had no mercy on me, and my body hurt like a 1000 needles wrapped in flames pocking 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 narcotics, I wanted to be alert to care for my baby, so the nurses did everything they could to help me nurse my baby. We all failed miserably.
God bless my husband and family for their unconditional love and support; one thing they couldn't do was to loan me a breast to feed my baby. I was not producing enough milk; my baby's blood sugar was dropping, so I had no choice but to supplement with the "F" word (formula). I was determined to feed my baby, the colostrum, his first biologic vaccine, which was my one successful breastfeeding story.
I tried with all my heart to continue breastfeeding, the pain was so unbearable, that the incision from the cesarean felt like a paper cut. The staff at the maternity ward were incredibly attentive with my newborn as well as completing their new-mom checklists. Sadly, the health care team completely dismissed the excruciating pain I was suffering from the RA, and the spectacular flare-up caused congestive heart failure and pulmonary edema, which required an additional hospitalization a week later.
I left my two-week newborn at home with his dad and grandparents while I went back to the same health care facility where I delivered the baby. Only, this time a competent and caring rheumatology team took over my case, which left me wondered - why wasn't I referred to this team the week before or during my pregnancy?
Then, the dreaded conversation with my rheumatologist occurred. She was honest and explained that the biologic (Cimzia) likely stopped working, or it needed a boost with Methotrexate. Besides, the prolactin, one of the hormones that stimulate milk production, can be pro-inflammatory, worsening the RA symptoms. Methotrexate, of course, is contraindicated in pregnancy and breastfeeding, so I cried and cried the burning tears that can only come with Sjögren's Syndrome. My eyes and heart still ache as I write this experience down.
This feeling of hopelessness and despair invaded my whole being. My rheumatologist couldn't say it better; breastfeeding is important but is NOT the only task you need to perform when caring for a newborn. What about changing the baby's diapers, clothing, holding, bathing, putting the baby in and out of the car seat, pushing a stroller, etc. All those simple tasks that required the little energy I had left after my traumatic postpartum experience.
I felt utterly dishearten going from being closely monitored as a "high-risk" patient during my pregnancy to being left alone after delivering my baby. I became a "nobody" in the health care system. I had poor access to physical supports on how to care for a baby while living with chronic pain.
What could be helpful?
The multidisciplinary team caring for women with Autoimmune Rheumatic Diseases planning to have a family should:
1. Provide unbiased guidance on breastfeeding and feeding alternatives, such as infant formula.
2. Connect with knowledgeable Dietitians in infant and toddler nutrition. Dietitians of Canada "Find A Dietitian" is a start.
3. Refer to reputable sources of information about infant formula. Examples: "Infant Formula: What You Need to Know" by Northern Health in British Columbia and "Understanding Infant Formulas" by Dietitians of Canada.
Should you join an online community?
I've found very helpful connecting with patient-led groups experiencing similar challenges and lived experiences, although every decision should be consulted with your health care team:
How did I become comfortable with the "F" word?
It was comforting to know that I was not alone with my feelings of remorse for not being able to breastfeed my baby. A qualitative study published in the Midwifery Journal in 2019, "Nobody knows, or seems to know how rheumatology and breastfeeding work" resonated with my lived experience. The researchers concluded that "Women with autoimmune rheumatic diseases (ARD) often felt pressurized into breastfeeding and experienced feelings of guilt if they were unable or did not wish to breastfeed. "
I am truly happy for those women whose ARDs are under control and can breastfeed their babies with proper supports. Some of us aren't that fortunate and should not be pressurized or shamed for not being able to breastfeed.
Feeding my baby with infant formula allowed me to recover from the multiple postpartum complications, adjust to the new RA therapies, manage pain and fatigue better, and, most importantly, it has let me enjoy motherhood.
I only hope that no other woman with inflammatory arthritis had to suffer through one of the most beautiful experiences one can have, which is being a mother. As my rant and lessons come to an end, I will leave you with this quote from Williams, D, et al.:
"Although the physical and emotional health benefits of breastfeeding for babies and mothers are unequivocal, we must ensure that all care is mother and family centred, supportive and non-judgemental and that mothers' decisions are supported and respected."