My husband and I have always known we wanted to have kids. As we reached a point in life where we started seriously thinking about starting a family, how my ankylosing spondylitis would impact us became a frequent conversation.
Knowing that there is a good chance of passing on my AS, I felt very strongly about making sure that we wouldn’t also be passing on conditions or genes that we didn’t even know we had. We both completed full genetic screenings (a process that took much longer than I expected, so if it’s something you might be interested in start early!), and when the results came back completely clear, we decided it was time to start trying for a baby.
As someone living with chronic illness I’m pretty in-tune with my body. I have weird twinges, aches, and pains often, but something this time felt different. I had a gut feeling that I was pregnant, and on Mother’s Day I took an at home test that confirmed it- we were going to be parents!
My rheumatologist and I had already discussed how I would handle medication and AS if I were to become pregnant. Based on those conversations, I decided, from that point through delivery, I would stop taking my Humira (maybe I’ll talk more on this decision in a later blog…).
There are plenty of women that continue on biologic medication during pregnancy, and plenty of doctors that recommend it. This was my personal decision, and with the support of my rheumatologist, I felt confident.
I was anxious about a potential flare, but I was optimistic that my symptoms would go into remission (something that my rheumatologist told me occurs in most pregnant women with AS), and that I would navigate the next 9 months flare-free.
As the shock and excitement settled, and the desire to prepare myself and my body took hold, I began researching to find an obstetrician who had experience with autoimmune conditions (specifically with women who had ankylosing spondylitis if possible).
I found a doctor at a local practice, and was excited and optimistic for my first appointment. Unfortunately, it turned out that even an OB who has experience with ankylosing spondylitis hasn’t necessarily seen it enough to know how it will truly manifest during pregnancy (if you’re interested, check out my Health Union article on my experiences specifically with my pregnancy medical team HERE).
As the summer began I was honestly pretty miserable and not enjoying pregnancy at all (unpopular opinion?). I was feeling nauseous all of the time, and frequently feeling lightheaded and dizzy. I actually had a fainting incident when out to breakfast with a friend, complete with emergency responders and MANY concerned onlookers (embarrassing, but my doctor did lots of testing and blood work and I was totally fine…apparently some women are just more prone to fainting during pregnancy and I had drawn the short straw).
While pregnancy in general was crummy, from an AS prospective I was actually feeling good through my first few months. I was more fatigued than I had ever been…which is saying a lot for someone with chronic illness…but I was thrilled that my AS still seemed to be under control.
We found out that we were having a little girl, and started sharing the news of our pregnancy with family and friends. I was feeling excited, but also anxious and constantly worried about whether or not my health would decline in the coming months.
I expressed concerns about pregnancy and labor/delivery to my medical team- I have fused SI joints, and I was worried about how it would affect my ability to deliver a baby. I was accepting of whatever path was necessary for my body to safely deliver my baby girl, but I wanted answers as to exactly how my joint fusion would play a role, and exactly how potential complications would be managed. I was referred to maternal fetal medicine (MFM- the high risk pregnancy doctors), and was hopeful that they would be able to give me the answers and information that I was looking for.
When I met with MFM I was severely disappointed. I left the appointment in tears and feeling more afraid than ever about how my body was going to make it through this pregnancy. I had expressed my concerns and was told “No, you’ll probably be fine” (which anyone else with chronic health issues knows can be a SUPER triggering thing to hear). My concerns had been dismissed, and I definitely wasn’t feel confident that I would actually be fine.
On top of AS concerns, MFM also wanted to talk about my low platelet count, and how that could complicate my pregnancy and delivery.
A few years ago I saw a hematologist for immune thrombocytopenia (ITP, also called idiopathic thrombocytopenic purpura). My platelets were a bit low, but nothing so concerning that we had to do anything about it. It turns out that during pregnancy it’s normal for a woman’s platelets to drop- so my already low ones were at risk of dropping even more. If they got too low I would be at risk for excessive bleeding during pregnancy or delivery, and would become ineligible for an epidural. This was something that had to be monitored throughout my pregnancy and delivery with frequent blood tests, but thankfully never got so low that it was a problem.
As the end of summer came my body decided that it wasn’t going to remain in remission like I had hoped and expected, and a major flare began. Most days I was unable to simply walk around my house. I was waking up every morning around 3 AM with the classic AS lower back pain. Eventually it got so bad that I was spending the night in the living room recliner with a heating pad, desperately trying to get comfortable enough for a few hours of sleep.
I reached out to my OB office countless times expressing how much pain I was in, and each time was simply told to “sleep with a pillow between my knees, take some Tylenol, and consider physical therapy.”
The pillow and Tylenol did absolutely nothing. I was angry that my doctor wasn’t doing more to help me. I was exhausted and miserable and feeling completely defeated. Feeling hopeless, I had no idea how I would make it through the rest of my pregnancy in so much pain.
At my first OB appointment of September my doctor again recommended a pillow between my knees, Tylenol, and physical therapy. I burst into tears in his office- were they really just going to continue telling me this?
Recognizing my frustration, we agreed that I would give physical therapy a try (though I wasn’t optimistic) and if it didn’t help we would think of other options.
I found a physical therapist who worked with pregnant women AND specialized in SI joint dysfunction (I hit the jackpot here, right?!), and got started right away. She gave me exercises to do at home, she massaged and worked on my painful spots, and she taught me how to tape my back and belly to give a little support and take some of the pressure off of my bad joints (and to help my diastasis recti– separation of my abdominal muscles caused by my growing belly– that was only adding to my pain). Unfortunately, my skin had a bad reaction to the tape so we had to stop that, and while the massage helped the pain short term, it was back a day after each appointment.
By the time October came I had been sleeping in the recliner for what felt like months…and I use the term “sleeping” generously because most nights I was just getting a series of small naps at best. I was still going to PT, but both myself and my physical therapist knew that we could continue to work on muscle strength and support, but PT wasn’t going to fix a flare.
I messaged my OB office one more time asking about coming in for an appointment because I was still in so much pain…and guess what the response I got was?
Pillow between my knees. Tylenol. Physical therapy.
I finally decided to reach out to my rheumatologist (in retrospect I should have done this WAY sooner, but hindsight is 20-20, right?) and it might have been the best decision I made my entire pregnancy.
He got me an appointment the week that I called. I went in feeling optimistic but nervous- but from the second he came into the exam room he made sure I knew that we would come up with something to help my pain.
After recognizing that pregnancy already sucks and that I shouldn’t be dealing with AS pain on top of it, he sat with me and brainstormed treatment and pain management options. He called other doctors and specialists as we sat there to get opinions on the feasibility of different treatments for someone who is pregnant. We came up with two viable options: go back on a biologic, or try low-dose Prednisone.
I’ve been on Prednisone before and DID NOT like how my body reacted to it, so that option was my least favorite. I had stopped taking my biologic medication when I found out about my pregnancy because of the potential risks, but from my understanding, the risks were all associated with fetal organ development, and at this point in my pregnancy baby girl’s organs were all well enough developed that it may no longer be a concern.
We decided that the option I felt the most comfortable with was getting back on a biologic medication at the start of my third trimester, and stopping a few weeks before my delivery date to allow the medication to clear my system before baby girl arrived.
My rheumatologist, acknowleding his lack of knowledge on how this could effect the baby, connected with my OB to make sure he was confortable with our plan. The process for the two offices to collaborate was much slower and more difficult that I anticipated, but after many phone calls and back-and-forths, both doctors were on board.
I started taking Enbrel, and within a week my AS symptoms were feeling exponentially better.
I had been dreading the final months of pregnancy because of how much AS pain I was in, but I entered the holiday season (and the pregnancy homestretch) feeling pretty good. I was sleeping back in my bed, and rather than waking up 10 times a night due to throbbing back pain, was now just waking up 10 times a night because baby girl was dancing on my bladder.
I was feeling ready to pop, I was exhausted, I had awful heartburn and acid reflux, but I was thankful that my flare had finally subsided.
I took my last dose of medication on New Year’s Eve, and crossed my fingers that symptoms wouldn’t come back before baby girl arrived.
The Omicron variant of COVID-19 emerged full force right as my due date was approaching, and I became incredibly anxious. Hospital policies were getting more strict, and as a teacher in a crowded classroom everyday, I was more and more concerned about contracting the virus and putting myself or my baby at risk. With a note from my doctor, and many phone calls to work, I was able to be placed on medical leave following winter break, so I never returned to work in the New Year, and instead sat at home impatiently waiting for labor to begin.
Baby girl had other plans and was apparently much too comfortable exactly where she was. My AS was still under control, but my body was DONE with pregnancy. My due date came and went, and at 41 weeks I went into the hospital to be induced and finally bring baby girl into the world.
Throughout my pregnancy I was desperate to find women to talk to who could understand my experience, or share how they have navigated carrying/delivering a baby with a chronic illness. If that is you right now PLEASE feel free to reach out to me through comments or my Instagram– I’m always happy to talk 🙂