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Neonatal lupus — which is not the same as lupus or even some kind of infant version of it — is an autoimmune disorder that happens when autoantibodies are passed from birthing parent to baby during pregnancy.

While the exact incidence of neonatal lupus is unknown, researchers share that the condition is rare and affects around 1 in every 20,000 infants.

With neonatal lupus, certain antibodies attack the cells in the body and may lead to a number of symptoms and complications, like skin rashes and heart issues.

Here’s what you need to know about what causes neonatal lupus, what symptoms your baby may have, and how this condition is treated in infants.

First things first: If you have lupus and are pregnant, it doesn’t mean that your baby will be born with neonatal lupus. In fact, the two conditions aren’t even the same.

According to the National Organization for Rare Disorders, neonatal lupus got its name because symptoms generally include a skin rash that can look like the ones found in people with lupus.

So, most babies born to people who have lupus don’t have neonatal lupus, according to the Office on Women’s Health.

On the flip side, of course, you don’t have to have lupus to have a baby with neonatal lupus. How does that work? It has to do with the antibodies you carry and what’s passed to your child during pregnancy.

In the case of neonatal lupus, certain antibodies — anti-Ro/SSA, anti-La/SSB, or both — are passed through the placenta to the baby. These antibodies attack the healthy cells, tissues, and organs in the body and can lead to things like inflammation, heart disease, or kidney disease.

Experts estimate that just 1 percent of women who carry these anti-nuclear antibodies will pass them onto their babies, resulting in neonatal lupus.

You may see signs of neonatal lupus before birth, particularly if your doctor is monitoring your baby for the condition.

A heart block, which can begin in the second or third trimester, is a congenital heart condition that causes disruption to the heart’s typical electrical activity. The heart may skip beats, have palpitations, beat slowly, or otherwise beat atypically.

Heart blocks affect around 5 percent of babies, and there are different levels: first-degree, second-degree, and third-degree, also known as a complete heart block.

A complete heart block may cause the following symptoms in a baby:

  • cyanosis (blue or purple look to the skin)
  • difficulty feeding
  • excessive fatigue and lethargy

At birth, babies with neonatal lupus may have skin lesions (a red, scaly rash). In many cases, according to 2004 research, it may take a few weeks for the rash to appear on the face, scalp, upper back, or chest. This rash will usually fade within a few weeks or months and should be totally gone within a year without any noticeable scarring.

Your baby may also have liver complications, and their lab work may show signs of:

  • anemia
  • low white blood cell count
  • low platelets
  • other abnormalities in the blood

If you have conditions or test results that put your infant at higher risk, your doctor may watch you and your baby closely for complications. In particular, your doctor may recommend regular fetal echocardiograms to monitor your baby’s heart activity and detect heart blocks, per 2018 research.

Otherwise, your doctor may diagnose your baby after observing the lesions (rash) or other clinical signs at birth. Your doctor may also test your blood for the Ro/La antibodies.

The treatment for neonatal lupus depends on how the condition is impacting baby.

Infants who have skin lesions may only be monitored. Again, rashes generally fade within 6 months without any treatment and don’t usually lead to long-term scarring.

When skin lesions disappear, it’s a sign that your antibodies have cleared the baby’s system, according to 2012 research. In the meantime, experts suggest protecting your baby’s skin from sunlight.

Similarly, other complications, like those affecting the liver or blood, may go away without treatment in around 4 to 6 months.

Some babies (very rarely) may develop more complicated concerns, like:

In this case, your little one might need additional treatments and monitoring targeted to their specific condition.

Babies who have heart blocks should be monitored closely to watch for any progression of the block. If necessary, some babies (57 to 66 percent of those with heart blocks) may need pacemakers to help restore typical heart rhythm.

Babies who have only skin lesions associated with neonatal lupus have a good outlook, according to 2012 research. These lesions may clear without treatment and have no lasting effects.

That said, even if a baby shows no additional signs of neonatal lupus, there’s still a chance of developing lupus or another autoimmune disorder later on in life. This has less to do with having neonatal lupus and more to do with an overall genetic predisposition for the condition.

Babies with neonatal lupus and heart concerns have a 20 to 30 percent mortality rate. Most cases of death are related to heart blocks that result in congestive heart failure.

Some babies with heart blocks may not have any symptoms until they get older and begin to exercise more strenuously. If children with heart blocks have pacemakers installed, they may experience complications if the pacemaker fails.

Neonatal lupus cannot be prevented. But it’s rare, and the outlook is relatively good in most cases.

If you’re considered high risk or have had a previous baby with neonatal lupus, speak with your doctor about monitoring during your pregnancy. When neonatal lupus has a poor outlook, it’s usually related to heart blocks, which can show up beginning in the second and third trimester.

Your doctor may recommend regular monitoring via echocardiogram starting around 16 weeks’ gestation.

Some doctors may prescribe medications during pregnancy to help prevent heart complications. These medications include hydroxychloroquine or dexamethasone.

Through regular monitoring, your doctor can assess the extent of the block and discuss any next steps — including medication during pregnancy or placing a pacemaker after birth — that can improve your baby’s quality of life.

If your baby is diagnosed with neonatal lupus, take heart. It often resolves itself within the first 6 months of life, and often, babies with neonatal lupus don’t have symptoms.