Lupus and Pregnancy: A Rollercoaster Ride
My doctor believes I have had lupus since I was 17. Diagnosed in my 40s, I spent many years struggling to find answers as to what was happening to me. This means all of my pregnancies had an increased risk that I was unaware of at the time.
Luckily, though my pregnancies were not exactly easy or carefree (and I did have two miscarriages for no apparent reason) I somehow managed to become the mother of four amazing kids.
Here's what you need to know about lupus and pregnancy.
Lupus Means Risks
Being pregnant with lupus has increased risks. In fact, women with lupus have a greater chance of miscarrying, which explains my two lost pregnancies.
Lupus can also elevate your risk of early delivery and increase blood pressure during pregnancy (a condition known as preeclampsia). I experienced both: preeclampsia with the pregnancy of my first-born, and my last child was born three weeks early and also threatened to arrive much sooner.
I never knew why these things happened to me. It seemed that all my life I had had “mysterious” medical conditions hit me out of nowhere.
Pancreatitis (swelling of the pancreas), stomach ulcers and digestive issues, pleurisy of the lungs (again unexplainable swelling), rashes, lupus hair loss, blood flow issues, swelling and fluid around my heart, and complete exhaustion. All of my sudden physical issues and conditions were a mystery until I was diagnosed with lupus a year after the last baby’s birth.
But there were so many other signs, and pregnancy seemed to be a trigger for trouble.
With my third child, following a routine checkup in my seventh month where my son’s heartbeat could not be found, I was admitted for an emergency C-section. I was rushed straight from my OBGYN’s office into the maternity ward and just before they began the procedure, the doctor heard the heartbeat return.
The emergency situation vaporized when suddenly his heartbeat filled the room and it sounded completely normal. But something had occurred, that was certain.
I spent two days on constant monitors where we learned my son’s heart would slow to a near stop four to five times in every 24-hour period. It was a rollercoaster of horrible moments followed by relief.
I would lay there as nurses rushed in, calling doctors to set up the operating room as they turned me this way and that (believing that maybe laying on the opposite side might help), all the while I heard my baby’s heart slow to a stop and that horrible silence would fill the room. Then it would slowly return to normal.
After a few days of this and certain I needed to deliver soon, the doctors transported me from my regular hospital to one with a specialized neo-natal unit, and the routine continued there with at least three occasions where they prepped me for an emergency C-section.
The heartbeat always returned and action was put on hold. Ultrasounds of my baby’s heart and numerous tests found nothing abnormal. The whole thing seemed like a giant mystery.
After two weeks, I was sent home on modified bed rest and required to check into the maternity ward for a two-hour monitor test of the baby’s heart every single day until I gave birth.
The Good News
AJ was born at 38 weeks, six pounds and seven ounces, with no obvious health issues. He later had seizures at four weeks old and some developmental issues he has since completely overcome (no idea if those were related) but his heart is actually healthy and strong.
I am well aware how lucky I am. I had lupus at the time and nobody knew my risks — and there are many.
In some cases, babies of moms with lupus can be born with a condition called neonatal lupus, which causes the fetus to develop problems in the heart, skin, liver, and/or blood. The most common manifestations are heart block, where the heart rate is abnormally slow, or a rash, most often seen around the eyes.
Somehow, my baby was born fine and nothing was detected.
But last year the risks seemed to return to him and me. At eight years old, my son AJ was diagnosed with a heart issue (his heart was misfiring and pausing).
Was lupus to blame for this and something had gone undiagnosed in him until now? That was my greatest fear.