living with lupus, day by day, moment by moment

“How do you want to deliver your baby?”

Missing from this inquiry was “How do you (lupus patient) want to deliver your baby (since it is a high risk pregnancy)“?

During my pregnancy, I got close to friends who are pregnant and became friends with pregnant women.  What I didn’t do was talk with women with lupus or other chronic illnesses that went through pregnancy.  In hindsight, this was a fatal mistake.  Experiencing lupus and pregnancy for the first time, I had no idea what to expect.  So I walked the path with women whose pregnancies were not complicated by an illness.  But mine was a high-risk pregnancy and I was not normal.  I should have prepared differently.

By my sixth month, I had announced my pregnancy to everyone I knew.  I was also visibly pregnant.  What was not visible, however, was my illness.  No one could tell I was sick, and I did not know better being that I was recently diagnosed.  So I concerned myself with buying strollers, baby carriers, diaper bags, and breast pumps.  I fretted over what kind of food I should avoid.  I continued to work and planned on how I would be returning to work after my maternity leave.  I decided that while home birth is not possible, I was going to try doing a natural birth without an epidural.  I attended birthing classes focused on pain management.  I looked for a doula.  I was doing everything that other “normal” pregnant moms-to-be were doing.

All wrong.

This is what I SHOULD have been doing.  I should have lined up a clear communication channel between my gynecologist and my rheumatologist so cooperatively, they are able to monitor my symptoms.  I should have fretted over what types of medicine I could take and when I might need them.  Even though I could hope for a natural birth, I should have prepared for a c-section since most lupus pregnancy end in preterm birth.  I should have learned of complications such as preeclampsia, since 1 out of 3 lupus births end in preeclampsia.  I should have researched NICUs.  I should not have been so tied to the idea of breastfeeding.  I should have prepared myself for the fact that I might be unable to care for my baby and lined up help, lots of help.  I should have learned to pace myself.

While nothing can really prepare you for the birth of your baby, I certainly feel that if my focus had been better aligned, the outcome of my first year of motherhood would have been very different.  And, I would not have suffered such a life threatening lupus flare.  I don’t have many regrets in my life, but I do regret not be better prepared for this pregnancy.

Six months pregnant, mistakenly following other women with  "normal" pregnancies

Six months pregnant and mistakenly following other women with “normal” pregnancies

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