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Neonatal lupus is a condition that occurs when certain antibodies pass from a pregnant person to their fetus through the placenta. These antibodies attack healthy tissues and may cause heart damage. If you test positive for antinuclear antibodies (ANAs), there’s a chance your baby will develop neonatal lupus. Monitoring during pregnancy is vital.
Neonatal lupus is a condition diagnosed in fetuses (during pregnancy) and infants (soon after birth). It typically causes temporary and harmless changes, like a skin rash, that go away within a year. But neonatal lupus sometimes affects a baby’s heart.
The most serious potential complication is autoimmune congenital heart block. This is when neonatal lupus prevents a baby’s heart from beating properly. Heart block in its most severe form is life-threatening, but it’s often treatable.
If your baby was born with neonatal lupus, it’s important to follow the guidance of your baby’s care team. They’ll help you understand what the diagnosis means for your baby and whether treatment will be necessary.
Neonatal lupus isn’t the same as systemic lupus erythematosus (SLE), commonly called lupus. Rather, it’s a distinct condition with its own causes and treatment.
Neonatal lupus happens when certain antibodies, called anti-SSA, anti-SSB or anti-U1-RNP, pass from a birthing parent to their fetus through the placenta. These antibodies are proteins that mistakenly attack healthy tissues in your body. Most of the time, these antibodies don’t affect the developing fetus. But sometimes they target healthy fetal cells, including heart cells.
Neonatal lupus only affects babies whose birthing parent has these specific antibodies in their body. Usually, this means the birthing parent has an autoimmune disease (for example, Sjögren’s syndrome, SLE or mixed connective tissue disease). But some people have these antibodies without any signs or symptoms of disease. Sometimes, neonatal lupus is the first clue that the birthing parent has one or more of the antibodies and may develop active autoimmune disease down the road.
If you have an autoimmune disease, that doesn’t automatically mean your baby will be born with neonatal lupus. In fact, the odds are in favor of your baby not having neonatal lupus. But it’s a possibility you should be aware of and discuss with your healthcare provider.
Neonatal lupus isn’t common. Its most serious complication, autoimmune congenital heart block, affects fewer than 2% of babies born to birthing parents who test positive for anti-SSA, anti-SSB or anti-U1-RNP antibodies. A history of autoimmune congenital heart block in a past pregnancy raises the risk of it happening again in a future pregnancy.
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The most obvious sign of neonatal lupus is a skin rash that’s visible at birth or appears within the first few months after birth. This rash is temporary and harmless. It looks like roundish rings with a discolored (often red) border. The center of each ring is clear (normal skin tone).
You’ll likely see the rash on your baby’s scalp and face, but it may also develop on their trunk, arms or legs. The rash resembles that of subacute cutaneous lupus, and that’s how neonatal lupus got its name.
Other temporary and harmless signs include:
All of these signs and symptoms clear up once maternal antibodies pass out of your baby’s body — usually by the ages of 6 to 9 months.
Neonatal lupus can lead to a serious complication called autoimmune congenital heart block. This is a problem with the electrical system in your baby’s heart. Electrical impulses travel through your baby’s heart to control their heartbeat. With neonatal lupus, antibodies attack the cluster of cells that conduct your heart’s electrical activity, called the AV node.
Sometimes, this causes only mild changes to your baby’s heartbeat (first- or second-degree heart block) that can reverse soon after birth. But some babies with neonatal lupus develop third-degree heart block, or complete heart block.
This means electrical signals can’t travel from the top chambers to the bottom chambers of your baby’s heart. This complete blockage of signals leads to an irregular heartbeat and makes it hard for your baby’s heart to pump out enough blood to their body. Third-degree heart block is the most severe form, and it can sometimes be fatal either before or after birth.
Heart block typically develops between weeks 18 and 24 of pregnancy. Healthcare providers can detect heart block during pregnancy by listening to the fetal heartbeat. If it’s too slow (bradycardia), this may be a sign of heart block.
Antibodies that pass from a birthing parent to their fetus through the placenta cause neonatal lupus. Researchers have linked these specific antibodies to neonatal lupus:
These antibodies are present in people diagnosed with various autoimmune diseases, including Sjögren’s syndrome, SLE, rheumatoid arthritis and mixed connective tissue disease. But these antibodies are also present in people with no signs of autoimmune disease or no diagnosis.
When these antibodies enter the fetal body, they cause changes that may be temporary or permanent. Researchers don’t understand exactly how these antibodies lead to these changes. But they know that the most serious and permanent changes affect the fetal heart.
Once inside the heart, these antibodies trigger an inflammatory process that leads to the formation of scar tissue. This scar tissue blocks the path of electrical signals and prevents the fetal heart from working as it should. In the most severe cases, this can threaten the health of the pregnancy or cause life-threatening complications after birth.
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Healthcare providers diagnose neonatal lupus during pregnancy or soon after birth. If they discover the fetal heartbeat is slower than expected, they’ll do a fetal echocardiogram. This is a safe, painless and noninvasive imaging test that shows the structure and function of the fetal heart.
The fetal echocardiogram may show changes that suggest neonatal lupus. If this happens, your healthcare provider will tell you the severity and what you might expect. Your provider will also test your blood for the presence of specific antibodies.
Sometimes, signs of neonatal lupus, like a rash, don’t appear until after birth. In this case, a physical exam will allow your care team to evaluate your baby and rule out other possible causes of the rash. They’ll also test you and/or your baby for antibodies to help reach a diagnosis.
Your provider will reach a diagnosis of neonatal lupus if:
AND:
Treatment for neonatal lupus depends on how severe it is. Your baby won’t need any treatment for a rash, abnormal blood cell counts or liver enzymes. These issues should go away on their own in less than a year.
Babies born with heart block may need a permanent pacemaker soon after birth or sometime during their childhoods. This involves a procedure that inserts a device to help their hearts work normally. Your baby’s care team will explain more about what to expect.
Some research shows that taking certain medications during pregnancy can lower your baby’s risk of developing heart block. Your provider may recommend you take hydroxychloroquine during pregnancy if you have a diagnosed autoimmune disease or test positive for the specific antibodies. Doing so may help protect your baby from the most serious effects of neonatal lupus.
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There’s no way to stop antibodies from transferring through your placenta while you’re pregnant. But you may be able to prevent severe heart damage or, at the very least, plan ahead for the treatment your baby will need after birth. If you test positive for anti-SSA, anti-SSB or anti-U1-RNP, your healthcare provider may recommend:
Your baby’s prognosis depends on how neonatal lupus affects their body. The prognosis is typically very good for babies who only have skin, liver and/or blood abnormalities. Everything should return to normal by ages 6 to 9 months.
When heart block occurs, the prognosis can vary widely. Heart block is sometimes fatal before or after birth. Most babies with heart block will need a permanent pacemaker sometime during childhood.
A small number of babies with neonatal lupus may later develop an autoimmune condition such as:
Every child is different, and it’s possible that neonatal lupus will affect your child’s life very little, if at all. Their healthcare team will tell you more about what you can expect and how to prepare.
Be sure to follow the appointment schedule your child’s healthcare team provides. They’ll tell you how often to bring your child in for checkups and follow-ups.
It’s also important to think about your own health. If you test positive for these specific antibodies but don’t have signs or symptoms of autoimmune disease, your provider may refer you to a rheumatologist. That’s because there’s a chance you may develop active autoimmune disease in the coming years. Your provider will help you understand what’s possible and keep a close eye on things so you can receive treatment at the right time.
Here are some questions that may help you learn more after a neonatal lupus diagnosis:
Neonatal lupus isn’t diagnosed in adults. It’s only diagnosed in fetuses and infants. Neonatal lupus isn’t the same as the lupus that adults get.
Systemic lupus erythematosus (SLE), commonly called lupus, is an autoimmune condition diagnosed in children and adults. SLE is systemic, meaning it affects your entire body, and it requires lifelong treatment and monitoring.
Neonatal lupus only affects babies during their earliest months of life. It’s not something you can develop later in childhood or as an adult.
Although neonatal lupus doesn’t get diagnosed beyond infancy, it may have some lasting effects on a person’s body. Its most severe complication, heart block, requires a pacemaker that stays in for life. And some research suggests babies diagnosed with neonatal lupus may face a higher risk of developing an autoimmune disease later in life.
If you had neonatal lupus as a baby, talk to your healthcare provider to learn more about any monitoring or testing you might need as you get older.
A note from Cleveland Clinic
Receiving a neonatal diagnosis while you’re pregnant can bring all sorts of worries to your mind. It’s hard not knowing what might happen as your pregnancy moves along. It’s OK to express your concerns to your healthcare team. They’ll do everything possible to help you understand what’s going on and what can be done to support a healthy pregnancy.
If you receive a diagnosis after your baby is born, they may need monitoring throughout their first month of life to check their heart function. They may also have a rash that lingers for several months. Your baby’s care team will explain what you can expect and help you and your whole family feel supported.
Last reviewed on 04/22/2024.
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Cleveland Clinic is a non-profit academic medical center. Advertising on our site helps support our mission. We do not endorse non-Cleveland Clinic products or services. Policy