Lupieliving

“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.