At one time, women with lupus were advised not to have children. The risk to their health and that of their fetus was too high.
Fast forward a number of years and the story has changed. The PROMISSE Study conducted in New York in 2011 found that 80% of lupus patients had a favorable pregnancy outcome.
It takes some planning, though. Every pregnancy of a woman with lupus is considered high risk and requires close monitoring by a perinatologist as well as her rheumatologist. A perinatologist is an obstetrician/gynecologist specially trained in high risk pregnancies. The focus of the team is to keep the mother and baby safe before, during and after birth.
Dr. Laura Tarter, director of Pregnancy and Reproductive Health at Brigham and Women’s Hospital Lupus Program. PHOTO: Courtesy of Dr. Laura Tarter
It may sound incongruous but the first step in planning a family is birth control, largely to avoid an unanticipated pregnancy. The type of contraceptive is important as well. For instance, estrogen-based birth control is not recommended for some women with lupus, explained Dr. Laura Tarter, the director of Pregnancy and Reproductive Health at Brigham and Women’s Hospital Lupus Program.
Women who have a condition called APS (anti-phospholipid syndrome) have a higher risk of blood clots and are placed on blood thinners to reduce the risk of a stroke or heart attack. According to Women’s Health, estrogen is also linked to the increased risk of blood clots during pregnancy. Progestin-only contraception, on the other hand, is a safer alternative.
The six month plan
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According to the Lupus Foundation of America, pregnancy should be considered only after a six-month period of time without flares or complications of lupus. Pregnancy during a flare could result in a miscarriage or stillbirth.
A change in medication is typically required. “Certain medications are dangerous to developing babies,” explained Tarter, and may cause birth defects. They are replaced by meds that are considered pregnancy compatible. She cautioned against stopping all medications, a misperception held by some women.
Physical changes during pregnancy can often mirror those caused by an uptick in disease activity. For instance, joint pain is common in both conditions. A checkup at least once every trimester can see trends in lab tests for signs of active disease, explained Tarter.
Risks
High blood pressure, diabetes and obesity all add to the risk of pregnancy, but two risks are of particular concern. A form of kidney disease called lupus nephritis occurs in up to 40% of people with lupus and is associated with higher rates of maternal and fetal complications. Nephritis is caused by inflammation and can result in kidney failure if not treated. Patients are followed closely by nephrologists.
Nephritis often occurs with another common complication called preeclampsia, which results in high blood pressure and puts stress on the heart, lungs and other organs.
Two additional types of antibodies (anti-SSA and anti-SSB) are linked to a rare condition called neonatal lupus in which the baby is born with lupus. It typically resolves itself within six months, but in some cases the baby is born with a heart block that causes a slow heartbeat. “We test the baby’s heart in the second trimester,” Tarter explained. Prenatal treatment can be rendered if necessary.
Close monitoring
Some women with lupus have been told that they could never get pregnant. Tarter pushes back. “There’s a very small percentage that might not be able to give birth,” she explained, “but most do well.”
“It takes close monitoring,” she emphasized. “You do so much better when the pregnancy is planned and coordinated.”
