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DURHAM, N.C. – Women with lung inflammation and scarring caused by an autoimmune disease, called interstitial lung disease, or ILD, have typically been told they should not get pregnant for fear the strain of childbearing could endanger their lives.

But a new study led by Duke Health researchers found that patients with ILD do not necessarily have to avoid or terminate pregnancies if they are closely monitored by trained specialists before, during and after pregnancy.

The study, presented Nov. 6 at the American College of Rheumatology meeting, provides a counter-narrative to decades of standard medical advice for younger women with ILD caused by autoimmune conditions such as lupus and sarcoidosis.

“There is almost no modern data on this,” said study lead Megan Clowse, M.D., a rheumatologist and associate professor at Duke University School of Medicine. “We had a patient who prompted us to launch the study – a young woman with lupus who had severe ILD who became pregnant. She carried the pregnancy, and it was very challenging, but ultimately successful.”

Clowse said a look-back through more than 20 years of Duke Health records found 67 ILD patients who had pregnancies, including many with more than one. 

Among this group of women in the study:

•    The average age was 32.1 years old
•    83% were black
•    69% had sarcoidosis, an inflammatory disease characterized by growths on the lungs
•    11% had severe lung function impairment, 25% had moderate, 50% had mild and 14% had normal lung function at the time of pregnancy

The researchers found that 70% of the pregnancies resulted in live births, while 10% were terminated and 20% resulted in miscarriages or still births. Fifteen percent of the women had pre-eclampsia, but there were no maternal deaths. 

Patients with severe ILD had more adverse pregnancy outcomes, but only 2.1% required intensive care before or after delivery. 

“To be clear, it wasn’t all sunshine and roses for these women, but the vast majority did remarkably well,” Clowse said. “Their pregnancies went better than expected. Particularly for women with moderate to mild ILD, there did not appear to be problem for pregnancies for themselves or babies. Women with more severe ILD did have pregnancy and post-partum complications, but even then, many had healthy babies.”

Clowse said it’s important for women with ILD to understand the risks posed by pregnancy, but that the long-standing message to avoid pregnancy should be revisited.

“This could change the lives of women who are living with ILD,” Clowse said. “It makes motherhood an option for them, which I think is really important and something that has been overlooked. 

“But pregnancy is not without risks, so an open dialog with a multi-disciplinary team is crucial to assuring that these women can be managed as safely as possible,” Clowse said. “This is a group of women who should go to a tertiary medical center that has strong high-risk obstetrics, pulmonary and rheumatology expertise to help manage the pregnancies.”

In addition to Clowse, the study team included Aardra Rajendran, Stephanie Giattino, Amanda Eudy, Aparna Swaminathan and Andra James.