The joy of pregnancy is never without challenges, even if you are relatively healthy. There are nonstop doctor’s appointments, dietary restrictions, fatigue, swollen ankles, constantly needing to pee, nausea, and countless other physical and mental health changes. 

But imagine having an autoimmune disorder — a condition where your immune system fights against normal cells — on top of pregnancy. Specifically, one that puts you at increased risk for recurrent pregnancy loss, blood clots, eclampsia, pre-eclampsia, placental insufficiency, and preterm delivery. 

Antiphospholipid Syndrome (APS) is an autoimmune disorder where the body makes antibodies that attack a fat (phospholipids) in your cells. These antibodies include lupus anticoagulant, anticardiolipin, and anti-beta2 glycoprotein. As a result, APS causes the blood to clot too easily.

woman with antiphospholipid syndrome in pregnancy

How do you know if you have Antiphospholipid Syndrome?

Unfortunately, APS can be difficult to diagnose, as there isn’t a set list of symptoms, and “many patients may be ‘asymptomatic,’” says Dorothy Bestoyong, DO, an OB/GYN based in Orlando, Florida. A medical history, an exam, and blood tests to check for the three previously mentioned antibodies are usually part of the diagnostic protocol for APS.

The following are the clinical criteria for diagnosis, according to Dr. Bestoyong:

1. Vascular thrombosis (aka blood clots) that occur in any tissue or organ
2. One or more unexplained deaths of a morphologically (aka the form and structure) normal fetus at or past 10 weeks gestation
3. One or more premature births of a morphologically normal neonate before 34 weeks gestation because of eclampsia or severe pre-eclampsia, or features consistent with placental insufficiency
4. Three or more unexplained consecutive spontaneous pregnancy losses before the 10th week of pregnancy with maternal anatomic or hormonal abnormalities and paternal and maternal chromosomal causes ruled out.

Some other conditions can be associated with APS, such as anemia, autoimmune thrombocytopenia, and lupus, but it’s important to remember these aren’t required for a clinical diagnosis.

So is it possible to maintain a pregnancy while living with APS? While the answer is yes, this is contingent on the patient adhering to medical advice and a specialized treatment plan. Read on for Dr. Bestoyong’s explanation of what APS management in pregnancy entails.

obgyn meeting her patient

Living with Antiphospholipid Syndrome and pregnancy

“It is still possible to have a healthy pregnancy despite APS,” assures Dr. Bestoyong. However, “[pregnant] patients diagnosed with APS would be considered high risk and would need additional monitoring as well as likely anticoagulation prophylaxis treatment (aka blood thinners) during their pregnancy and throughout postpartum.” So if you have APS and are either pregnant or trying to conceive, you will want to consult with a high-risk pregnancy expert like a maternal-fetal medicine specialist as well as your OB/GYN. “The key is to be aware of the things to look for and work closely with your OB and maternal-fetal medicine OB to help manage your pregnancy,” says Dr. Bestoyong.

In addition to medication and extra checkups, pregnant patients with APS may also need testing for a variety of potential concerns including blood clotting levels in their blood and high blood pressure.

woman with antiphospholipid syndrome in pregnancy having her blood pressure monitored

Treating Antiphospholipid Syndrome in pregnancy

As with any condition, every case varies by individual, but “the goal is to improve maternal and fetal-neonatal outcome,” says Dr. Bestoyong of treating APS in pregnancy. “Treating or managing someone with a history of APS depends on whether they've had a history of thrombosis or blood clot.” She goes on to say that if a patient has had a blood clot history they will need to be on blood thinners that are safe in pregnancy, such as heparin. Patients will usually take heparin during pregnancy and through six weeks postpartum. “After delivery, patients can also be transitioned to coumarin as their blood thinner.”

Even if you do not have a history of blood clots, your medical team may still prescribe a course of blood thinners throughout your pregnancy and the postpartum period: “There has not been any good evidence for treatment in patients who have never had a history of blood clots in the setting of APS,” explains Dr. Bestoyong. “However, expert opinion has recommended monitoring or use of a prophylactic dose in the same time frame.”

Above all, it’s critical that pregnant patients living with Antiphospholipid Syndrome start prenatal care as early as possible, and work with both their OB/GYN and maternal-fetal medicine specialist for regular monitoring. Doing so offers the best chance of a healthy pregnancy.

Sarene Leeds holds an M.S. in Professional Writing from NYU, and is a seasoned journalist, having written and reported on subjects ranging from TV and pop culture to health, wellness, and parenting over the course of her career. Her work has appeared in Rolling Stone, The Wall Street Journal, Vulture, SheKnows, and numerous other outlets. A staunch mental health advocate, Sarene also hosts the podcast “Emotional Abuse Is Real.” Visit her website here, or follow her on Instagram or Twitter.