Deciding to Have Children With Ankylosing Spondylitis
I was diagnosed with ankylosing spondylitis the year before I became pregnant. At the time, I was living in the Chicago area and had access to excellent medical care. I also sought out naturopathic care to support my ongoing wellness journey. By self-advocating and seeking out medical alternatives, I learned the importance of managing my health holistically as well as seeking out “traditional” care. Even though my pain at times was excruciating, I was slowly able to move past it through diet, exercise, and occasionally over-the-counter medication.
By the time I was ready to conceive, I was experiencing a normal, pain-free life. I’ve always wanted children, and felt it was necessary to bring children into the world to have a complete life. Life without children might be easier for people with AS, who have suffered from intermittent immobility in the past. Even though I’d been feeling better, I could experience a flare-up at any time.
However, I knew I could manage my disease at its worst
When I was contemplating pregnancy, I assuaged my fears knowing that every day, I have the opportunity to learn more about managing my symptoms. I have a supportive and empathic partner, so I knew that I wouldn’t be alone in hard times. Additionally, in terms of autoimmune diseases, scientists make new discoveries about immune response all of the time and more treatments will be available in the future. Healthcare can only advance.
Taking this all in, I felt at peace
However, I was skeptical in terms of carrying and giving birth to a child. Would my pelvis hold up despite all the erosion? Would the extra pressure on my organs pinch my nerves and tissues and bring pain all over again? I needed to understand exactly what I was facing.
After educating myself on childbirth, I stopped viewing my body as eroded, deteriorated, and broken. Instead, I began to view my body as a strong, capable vessel to carry and give birth to a child. All my provider-midwives said that I would do fine. And, as an added bonus, I found that women’s bodies naturally limit their immune responses during pregnancy.
I felt absolutely no AS pain during pregnancy
Despite being labeled a “geriatric mother,” I successfully gave birth without medication or extreme medical intervention, twice.
I now have two healthy children
Sometimes I look at them, these happy, jumping, running, climbing, super-active children, and I wonder to myself: "Are you HLA-B27 positive?" The research shows that yes, there is a 50% chance they are. But, the research also shows that there is only a 5%-20% chance they go on to develop AS. It’s likely that at least one of my children is HLA-B27 positive. So, how do I prevent this gene from activating?
This is where my understanding gets a bit cloudy...I’m still educating myself
Sometimes I wonder how I got the gene, since neither of my parents have the specific symptoms of AS and aren’t aware of their HLA-B27 status. I don’t think I really need or want to know who gave it to me, since it’s not important. What is important is raising children with a solid foundation for health. If the foundation is sound, then there will be less chance for it to break.
In my opinion, a solid foundation emphasizes physical activity, good nutrition, and helping our children achieve a positive sense of self. Of course, there are factors out of a parent's control, but giving them a solid foundation would help their bodies and minds be more resilient and better able to deal with stress, keeping the cortisol levels low and limiting inflammation, which we all know is the bane of our AS existence.
How about you? Are you a parent with AS? Or, are you newly diagnosed and contemplating children in the future? I’d love to hear your thoughts.
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