This Decision is Between My Husband and Me . . . and My RA

Back when my now-husband and I were talking about getting married, we discussed the things most important to us in merging from single life to a partnership, such as bank accounts, my desire to keep my name, and that we wanted children. I knew that my rheumatoid arthritis might impact the how and when of having kids, but we determined that our ideal scenario would be two biological children spaced about two years apart.

Four years later, I was caring for our baby girl. She was a “high needs” baby who required a lot of work on my part to soothe her. I was exhausted. Whoever came up with the phrase “slept like a baby” was not talking about my daughter. At four weeks old she once went a nine-hour stretch without sleeping, an anomaly for newborns. She rarely slept unless she was held; I would rock her to sleep, slowly walk over to the crib, and ever so gently lay her down. As soon as my hands left her body, she would wake up and start wailing. Caring for a colicky infant is difficult for anyone, but when you add the fatigue and pain of RA to the mix, it’s incredibly challenging. During that time I reconsidered our previous plan, and told my husband that maybe we should stop at one child.

However, time went on, she became a little easier to soothe (although she wouldn’t sleep through the night until 21 months old), and I revisited our original plan of having two children. Yet having them two years apart no longer seemed ideal. A two-year old still requires a lot of care, whereas a three-year old is more independent (“I can do it!” is a common refrain). I thought if my daughter was three when our second child was born it would be more manageable to add infant care to the job of caring for her. My husband and I agreed to wait before attempting a second pregnancy, and try to space the children at least three years apart. We were very content with that plan.

However, at my next rheumatologist checkup my doctor had different ideas. I thought I was doing pretty well, as my pain levels were manageable. However, she was very concerned about my level of inflammation, and reminded me that it is swelling, not pain, that leads to joint deterioration. At that point in time I had been off of my meds for 30 months for pregnancy and breastfeeding, and I had not yet weaned my daughter. My rheumatologist did not support my space-the-kids-three-years-apart plan, as it would result in my being off of biologics long enough to contribute to long-term joint degeneration. Instead, she recommended that I either a) go ahead and get pregnant soon so that I could get back on drugs permanently a year sooner than my plan allowed, or b) space the pregnancies further apart so that I would have at least a year back on meds before attempting a second pregnancy.

I was dejected. Decisions involving whether and when to have children are complicated enough without having to factor in treatment regimens. There are so many issues such as mother’s age at pregnancy, the impact of pregnancy and infant care on one’s career, and the impact of age difference on sibling interactions, to name just a few. My husband and I had discussed all of these factors at length and had come up with a plan we were happy with, but now my doctor was saying that my disease activity level was too high for her to support that plan. I was 34 years old, and didn’t want to put off a second child for too long, but I was also still getting up multiple times a night to care for my daughter and wasn’t eager to get pregnant right away. I mulled all of this over during the 90-minute drive from my rheumatologist to my home. That evening when I discussed the doctor’s advice with my husband, he immediately said, “Let’s space them two years” just as I was about to say that I wanted to space them four years apart. However, amazing man that he is, he quickly said, “It’s your body that needs the meds and it’s your body that will carry the baby, so this is your decision, and I support whatever decision is best for you.”

I am so blessed. I am fortunate to have health insurance and good medical care, and I am beyond lucky to have a loving, supportive husband and two healthy, beautiful children. Things could be infinitely worse. Still, I doubt I’ll ever stop hoping for a cure for rheumatoid arthritis. Its impact is so profound and insidious, entering into all aspects of life, including the most private and personal decisions one can make.