Pregnancy and Chronic Illness: What I Learned
By Mariah Zebrowski Leach
R&AConnection News: Chronic inflammatory conditions like rheumatoid arthritis (RA), Crohn’s disease, ulcerative colitis, and ankylosing spondylitis are often diagnosed or active during childbearing years. When I was diagnosed with RA at 25 I was faced with that daunting question, “Will I still be able to have a baby?”
It was one of the very first thoughts I had after being diagnosed with RA. My partner and I knew we wanted children someday, and as I went from being a successful dual degree graduate student to barely being able to walk, I worried a lot about our future.
I had friends making decisions about parenthood around the same time I was, but none of them could truly understand how difficult it was to decide which medications might be safe during a pregnancy. None of them could offer advice on what to do if my hands hurt too much to change a diaper or hold my baby. And, unfortunately, there were very few other resources available at the time. I don’t think I’ve ever felt more alone in my whole life.
Today, almost ten years later, I’ve navigated my chronic illness through two pregnancies—my little boys are five and three. Whether you’re thinking about your very first pregnancy or planning to expand your family after being diagnosed with a chronic illness, I’d like to share some of what I’ve learned through my own experiences. I don’t want anyone else to have to feel as alone as I did.
Most people living with a chronic illness rely on some type of medication, which may or may not be compatible with pregnancy. For example, methotrexate—a disease modifying antirheumatic drug (DMARD) used to treat RA, severe psoriasis, and certain types of cancer— is not safe for use while pregnant. In fact, methotrexate is sometimes prescribed to purposefully terminate ectopic pregnancies, so it was a medication I definitely had to stop taking prior to my pregnancies.
But while there seems to be a widespread impression that zero medication is always the best choice during pregnancy, this assumption is not necessarily true for women living with chronic illnesses. Controlling disease activity during pregnancy may lead to better outcomes for mother and baby, and today there are a number of medications that are considered safe for use during pregnancy.
It’s also important to note that the FDA is currently revamping its pregnancy labeling standards for medication. The single letter pregnancy categories, which were often misinterpreted by patients as an overall “safety grade,” are being replaced with an integrated risk summary for each medication. The new system will take into account the real-world context of caring for pregnant women who may also need medication to control their own diseases.
So before you decide which medications to discontinue, talk to the doctor treating your chronic illness and your OB to find out what your options are. It’s also important to make sure your doctors are looking at the most recent data because it changes rather quickly. For example, I was approved to use a medication during my second pregnancy that I was advised to avoid during my first because there was more data just a few years later.
A great resource for up-to-date data is MotherToBaby, a nonprofit organization that researches the effects of medications on pregnancy and breastfeeding. My second son and I joined one of their studies because it’s my hope that future moms-to-be will have access to even better data for making these difficult decisions. If you do decide to stay on a medication while pregnant or breastfeeding, I sincerely hope you’ll consider joining a study too!
Trying to Conceive (TTC)
I know from experience that living with a chronic illness and TTC can be difficult, both physically and emotionally. So if you’re ready to start or expand your family, the first step is to work with your doctors to assess the severity of your disease. If your doctor recommends that pregnancy isn’t a safe option for you, please remember that surrogacy and adoption are equally beautiful pathways to growing a family!
If you are considering pregnancy, the next step is to evaluate current disease activity. Research shows that it’s best to defer pregnancy until your chronic illness is as well controlled as possible because as active disease at conception can affect both mother and baby.
Another thing to keep in mind is the impact of nonsteroidal anti-inflammatory drugs (NSAIDs), which are commonly used to control pain and inflammation. NSAIDs can actually inhibit ovulation— even the over-the-counter varieties like Advil or Aleve—which is something no one told me when we were TTC! Studies have even been done considering NSAIDs as a form of emergency contraception. So if you are TTC, you can increase your chances by talking to your doctor about fertility-friendly options for controlling pain.
With certain chronic illnesses, like RA, there is actually a possibility of remission while pregnant. I was very excited about this idea and assumed I’d feel like I did prior to being diagnosed in the first place. Unfortunately, I forgot that pregnancy can take a huge physical toll all by itself! So even if you experience remission, pregnancy still comes with its own set of unpleasant symptoms such as morning sickness, fatigue, and aches and pains.
It’s also always possible that your disease will remain active. In my case, my RA flared badly during my second pregnancy. For this reason, it’s really important to work with your doctors to have a pregnancy-friendly treatment plan in place. I recommend having this plan ready in advance, so you won’t have to make too many difficult decisions while miserable and hormonal! It’s also useful to know about other pregnancy-safe options for pain relief—my favorites were prenatal massage and warm baths with Epsom salts.
Today’s society places a lot of pressure on mothers to breastfeed. While the American Academy of Pediatrics recommends that babies be exclusively breastfed for the first six months of life, these benefits need to be balanced with the importance of mom’s health—particularly for mothers with chronic illnesses.
If you want to breastfeed, talk to your doctor about what treatment options might be compatible. For example, recent studies suggest that TNF inhibitors— biologic medications used to treat certain autoimmune diseases like inflammatory bowel disease and RA —are safe for use while breastfeeding. MotherToBaby and LactMed are great resources to make sure you have the most current data. If you do decide to breastfeed, I highly recommend getting a nursing pillow. Proper positioning is important to make sure you don’t place any additional strain on your body. Trust me on this one!
I breastfed each of my boys for three months, using different medications each time due to updated data. Unfortunately, both times my RA still got so bad that I could barely hold my babies. Although weaning was heart wrenching, today I know that there is so much more to being a mom than how I feed my babies. When it comes down to it, the most important thing to remember is that you need to make the best choice for you and your family, regardless of what others may think or say.
The Postpartum Period
Bringing home a new baby is a difficult transition for any parent, but the possibility of a post-birth flare can make it even more challenging for mothers with chronic illnesses. So before your baby arrives, I recommend putting a plan in place to make the postpartum period as easy as possible. For me this included filling my freezer with healthy meal options and making sure I had baby gear that would be helpful—like a co-sleeper so I could reach my baby without getting out of bed or a comfortable way to wear my baby when it was too difficult to hold him in my arms.
As a mom with a chronic illness, making self-care a priority is especially important. I try to remember: I can’t pour from an empty cup. It’s physically impossible! If I don’t take care of myself, I’m not going to be able to take care of anyone else. And while I will admit that having RA made both pregnancy and the newborn period very challenging, I’m living proof that it is possible to manage pregnancy and chronic illness— even more than once!