There are so many resources available to patients online, but blogs offer a particularly clear window into what life is really like with a chronic illness. Blogs give patients the opportunity to connect with others who may have had similar experiences, which can help us feel less isolated. Blogs also offer us the opportunity to learn from one another!
The Mamas Facing Forward Featured Blogger series will connect you to blogs featuring real moms living with chronic illnesses – all of whom find their own ways to keep facing forward! This article originally appeared on Crunchy Allergist and is reprinted here with permission.
If you have a blog post you’d like to submit, please email us at info@mamasfacingforward.com!
Preparing for Pregnancy with Sjogren’s: Decision making to try for another pregnancy amid the pandemic (2/3)
by Kara Wada MD of Crunchy Allergist
This is part 2 of a 3 part series called Preparing for Pregnancy with Sjogren’s.
If you missed part 1, click here to get caught up.
Part 2.
They say what happens in Vegas stays in Vegas…
But alas, since this story is pretty scandal-free…
Let’s go back to February 2020.
Since becoming parents, each of us had had a few instances where work individually had taken us away from home for a few days time but we had not had any parents-only time away aside from a rare breakfast or dinner date.
When Aki was invited to a work training, I was floored that his parents agreed to fly out from Los Angeles to watch the girls so I would be able to tag along.
This quick weekend away provided the time and space I never knew I needed to dream about what the future could look like.
I packed a borrowed copy of The Gifts of Imperfection, a journal, and a favorite pen.
While Aki was learning about heart-related things…
I indulged in quiet alone time.
Leisurely solo lunches and a little time at the spa.
I journaled about my purpose. My values. My crazy big dreams.
Once his sessions wrapped up for the day, we reconnected for dinner, window shopping, and walking around the craziness of The Strip.
Talking about how weird it was to have uninterrupted conversations, how much we missed our girls, and if or when we might consider having more children.
We both shared our fears for my health, the health of the pregnancy, and the sleep deprivation that accompanies a new arrival.
We left a couple of days later, spirit renewed.
Committed to having an occasional weekend away together more often than every 4-5 years and to scheduling appointments with my physicians to explore the risks of pregnancy.
About 3 weeks later… the pandemic hit.
And we hit the pause button.
At some point, sensing the undercurrent of anxiety…
The girls moved into our room…
And started asking for a baby brother…
They didn’t quite understand that their nightly presence in our room wasn’t exactly facilitating their request but we focused as best we could on settling into the new “normal” and trying to shield our girls from the worst of our worries.
Months later, when my routine checkups were rescheduled,
I started asking my rheumatologist and obstetrician questions Aki and I discussed months prior:
- What were the risks to my health if I were to get pregnant again?
- What were the risks to the baby’s health?
- Was I at higher risk for miscarriage now?
- What could I do to minimize risk?
- How safe were medications during pregnancy?
- Would I need to start any other medications?
- What type of monitoring/labs would I need before trying to get pregnant?
- What type of monitoring would I need during the pregnancy?
- Was there anything else my husband and I should consider?
I learned a lot.*
The biggest risks to my health were the increased risk of developing pre-eclampsia and flaring during pregnancy or after delivery.
The risk of a flare on average was about 30% per year whereas risk postpartum was up to 60% in one study.
The biggest risks to the baby’s health included neonatal lupus and congenital heart block (~1-2%, but higher risk if prior pregnancies have been affected).
Neonatal lupus is a condition where my autoantibodies cross over the placenta and impact the baby’s health causing reversible rashes, liver and blood cell abnormalities.
In the case of moms with SS-A auto-antibodies though this also included the possibility of permanent damage to the electrical system in the baby’s heart.
In the worst-case scenario-the baby could be dependent on a pacemaker their whole life.
Risks could be minimized by staying on my hydroxychloroquine, ensuring I was stable without a flare for 6 months prior to trying to conceive, and starting aspirin in the second trimester of pregnancy.
Hydroxychloroquine and aspirin were considered very safe and necessary during pregnancy given my particular health history.
For instance, hydroxychloroquine was associated with decreasing the risk of neonatal lupus and aspirin had been shown to decrease the risk of pre-eclampsia from 10-20% down to 2-5%.
I would need to ensure my inflammatory markers were normal/stable
and we also checked to see if I had any new auto-antibody development that might impact a future pregnancy including some antibodies associated with pregnancy loss and blood clots.
I was fortunate to learn that I had not developed the antibodies associated with an increased risk of miscarriage.
I would need my blood counts, blood chemistry, and complement levels measured routinely
during the pregnancy and I would need to follow with the Maternal-Fetal Medicine (high-risk obstetrics team) for additional monitoring starting in the second trimester.
This pregnancy would have significantly more visits, labs, monitoring, and costs associated with it.
I also would need to consider the possibility of labor being induced if my or baby’s health was compromised.
These were all of the answers to questions that arose in non-COVID times…
Factoring in a global pandemic only complicated our own decision-making even further.
Specifically, what was the risk of an infection on my health or the baby’s health?
When would a vaccine be available?
These were the similar questions my patients were asking me and I knew we didn’t have black and white answers.
So we waited…
And while we waited the girls continued asking for a baby brother.
A year ago, the fog started lifting again.
Aki and I were able to get our first doses of the vaccine just prior to Christmas and were fully vaccinated by the time his 40th birthday rolled around the end of January 2021.
Things were looking bright…
And the girls kept asking for a brother.
Weighing the risks and knowing we weren’t getting any younger…
We decided we would try and see what happened.
I started prenatal vitamins and we stopped trying to prevent pregnancy.
Click here for Part 3.
