It's normal to feel a little scared if you suddenly notice some red spots on your newborn's body, or if the doctor says something about your baby's heart rate. Sometimes these things can be caused by a condition called Neonatal Lupus. Today, we'll talk about this in a little more detail, just like you would talk to a friend.
What is Neonatal Lupus?
Simply put, Neonatal Lupus is a condition that can affect a baby either in the womb (fetus) or immediately after birth (infant). Most of the time, it causes temporary, harmless changes, such as a skin rash. These usually go away on their own before the baby is a year old. However, sometimes Neonatal Lupus can affect the baby's heart.
The most dangerous complication that can occur in this case is ``autoimmune congenital heart block.`` That is, this ``Neonatal Lupus`` prevents the baby's heart from beating properly. This heart block can be life-threatening if it is at its most severe, but it can often be treated.
If your baby has been diagnosed with Neonatal Lupus, it's important to follow your baby's care team's instructions carefully. They will explain how the diagnosis will affect your baby and whether treatment will be needed.
Is this related to adult lupus (Systemic Lupus Erythematosus - SLE)?
No, don't confuse the two. Neonatal Lupus is not the same disease as Systemic Lupus Erythematosus (SLE), which we usually call lupus. It is a different condition with its own causes and treatment.
Neonatal Lupus is caused by certain types of antibodies, such as anti-SSA, anti-SSB, and anti-U1-RNP, being passed from the mother to the baby through the placenta. These antibodies are actually proteins that mistakenly attack healthy cells in our body. Most of the time, these antibodies do not affect the baby growing in the womb. But sometimes, they can attack the baby's healthy cells, especially the heart cells.
Neonatal Lupus only occurs in babies whose mothers have these specific antibodies. This usually means that the mother has an autoimmune disease. For example, Sjögren's syndrome, SLE, or mixed connective tissue disease. However, sometimes these antibodies can be present in the body without any symptoms. In some cases, Neonatal Lupus may be the first sign that the mother has one or more of these antibodies and that she may develop an active autoimmune disease in the future.
Remember, if you have an autoimmune disease, it doesn't mean your baby will definitely develop Neonatal Lupus. In fact, it's more likely that your baby won't develop Neonatal Lupus. But, this is something you should be aware of and talk to your doctor about.
How common is this situation?
Neonatal Lupus is not uncommon. Its most severe complication, autoimmune congenital heart block, affects less than 2% of babies born to mothers who are positive for antibodies to anti-SSA, anti-SSB, or anti-U1-RNP. However, if you have had autoimmune congenital heart block in a previous pregnancy, you are at greater risk of having it again in a subsequent pregnancy.
What are the symptoms of `(Neonatal Lupus)`?
The most obvious sign is a skin rash. This can be seen at birth, or it can appear within the first few months of life. This rash is temporary and harmless. It appears as a circular ring with a colored edge (often red). Each ring has a clear center (i.e., normal skin color).
You'll most likely see these lesions on your baby's scalp and face. However, they can also appear on the chest, arms, and legs. These lesions are similar to those seen in a condition called ``subacute cutaneous lupus.'' That's why they're called ``neonatal lupus.''
There are other temporary and harmless symptoms as well. They are:
- Decreased red blood cell levels (anemia).
- Low levels of platelets (cells that help blood clot) (thrombocytopenia).
- Low white blood cell count (neutropenia).
- Elevated liver enzyme levels.
All of these symptoms disappear when the antibodies from the mother are completely removed from the baby's body. They usually improve between 6 and 9 months of age.
Neonatal Lupus and Heart Block
As we mentioned earlier, Neonatal Lupus can cause a serious complication called autoimmune congenital heart block. This is a problem with the baby's heart's electrical system. The baby's heartbeat is controlled by electrical impulses that travel through the heart. In Neonatal Lupus, antibodies from the mother attack a group of cells that control the electrical activity of the heart, called the AV node.
Sometimes this only causes minor changes in the baby's heart rate (first- or second-degree heart block). These may resolve after birth. However, some babies can develop third-degree heart block, or complete heart block, due to Neonatal Lupus.
This is when electrical signals from the upper chambers of the heart are unable to pass to the lower chambers. When these signals are completely blocked, the heart beats irregularly, making it difficult for the baby's heart to pump enough blood to the body. Third-degree heart block is the most severe form. It can sometimes be fatal before or after birth.
Heart block usually develops between 18 and 24 weeks of pregnancy. Doctors can detect it during pregnancy by listening to the baby's heartbeat. If the heart rate is slower than expected (called bradycardia), it may be a sign of heart block.
What are the causes of Neonatal Lupus?
As we mentioned earlier, Neonatal Lupus is caused by antibodies that pass from the mother to the baby through the placenta. Researchers have linked these specific types of antibodies to Neonatal Lupus:
- `(Anti-Sjögren's-syndrome-related antigen A (anti-SSA/Ro))`
- `(Anti-Sjögren's-syndrome-related antigen B (anti-SSB/La))`
- `(Anti-U1 ribonucleoprotein (anti-U1-RNP))`
These `(antibodies)` are found in people with various autoimmune diseases, such as `(Sjögren's syndrome)`, `(SLE)`, `(rheumatoid arthritis)` and `(mixed connective tissue disease)`. However, these `(antibodies)` can also be found in people who have no symptoms or who have not been diagnosed with the disease.
When these antibodies enter the baby's body, they can cause temporary or permanent changes. Researchers still don't fully understand how these antibodies cause these changes. But they do know that the most serious and permanent changes are to the baby's heart .
Once inside the heart, these antibodies start an inflammatory process, which leads to the formation of scar tissue. This scar tissue blocks the electrical signals, preventing the baby's heart from working properly. In the worst cases, this can be a health risk during pregnancy or cause life-threatening complications after birth.
How is this disease ``Neonatal Lupus'' diagnosed?
Doctors diagnose Neonatal Lupus either during pregnancy or immediately after birth. If they see that the baby's heart rate is slower than expected, they will do a fetal echocardiogram. This is a safe, painless, noninvasive test. It can look at the structure and function of the baby's heart.
This `(fetal echocardiogram)` may show changes that suggest `(Neonatal Lupus)`. If so, your doctor will tell you about the severity of the condition and what to expect in the future. They will also check your blood for the presence of those special `(antibodies).`
Sometimes, symptoms of Neonatal Lupus, such as skin lesions, only appear after the baby is born. If this happens, the medical team will do a physical exam to rule out other possible causes of the lesions. They may also test you, your baby, or both of you for antibodies to help make a diagnosis.
Your doctor will diagnose you with Neonatal Lupus if both of these conditions are present:
- If you and/or your baby are `(positive)` for `(anti-SSA)` and/or `(anti-SSB)` and/or `(anti-U1-RNP)`.
and
- If your baby has at least one confirmed symptom of ``Neonatal Lupus''.
How is Neonatal Lupus treated?
Treatment depends on the severity of the condition. No treatment is needed for skin lesions, abnormal blood cell counts, or elevated liver enzymes. These problems usually resolve on their own in less than a year.
However, babies born with heart block may need to have a permanent pacemaker inserted either at birth or during childhood. This is a surgical procedure to implant a device to help their heart beat properly. Your baby's medical team will tell you more about this.
Some research has shown that taking certain medications during pregnancy can reduce the risk of your baby developing heart block. If you have a diagnosed autoimmune disease, or if you test positive for certain antibodies, your doctor may recommend that you take a medication called hydroxychloroquine during pregnancy. Doing so may help protect your baby from the most serious effects of Neonatal Lupus.
What is the prognosis for babies with Neonatal Lupus?
Your baby's outlook depends on how Neonatal Lupus affects his body. For babies with only skin, liver, and/or blood abnormalities, the outlook is very good. Everything should return to normal by 6 to 9 months.
However, if heart block occurs, the outlook can be very different. Heart block can sometimes be fatal before or after birth. Many babies with heart block will need a permanent pacemaker during childhood.
A small number of babies with Neonatal Lupus can later develop an autoimmune condition like this:
- Juvenile idiopathic arthritis
- Psoriasis
- Autoimmune thyroid disease
- Type 1 diabetes
"Every baby is different. Neonatal Lupus may have little or no impact on your baby's life. Their medical team will give you more details about what to expect and how to prepare."
Can Neonatal Lupus be prevented?
There is no way to stop antibodies from crossing the placenta while you are pregnant. However, you can prevent serious damage to your baby's heart, or at least plan ahead for any treatment your baby may need after birth. If you test positive for anti-SSA, anti-SSB, or anti-U1-RNP, your doctor may recommend the following:
- Taking certain medications early in pregnancy and during pregnancy can help protect the baby from developing heart block.
- Screening for heart block (fetal echocardiograms) from around 16 weeks of pregnancy.
- Monitoring the baby's heart function during the first month of life. This is to check for signs of heart block (if they haven't already appeared), as some babies don't show any signs until a few weeks after birth.
When should I seek medical advice?
It is important to follow the test and appointment schedule provided by your child's medical team exactly. They will tell you how often to bring your child in for checkups and follow-ups.
It's also important to take care of your health. If you test positive for certain antibodies but don't have signs or symptoms of autoimmune disease, your doctor may refer you to a rheumatologist, a doctor who specializes in joint pain and related diseases. This is because there is a chance that you could develop an active autoimmune disease in the next few years. Your doctor will explain what you can expect and monitor you closely so that you can get treatment right away.
What questions should I ask my child's doctor?
These questions may help you learn more about Neonatal Lupus after a diagnosis:
- How will Neonatal Lupus affect my pregnancy/my baby?
- What treatment options are there?
- What is the prognosis?
- What is the chance that Neonatal Lupus will affect a future pregnancy?
Can adults develop ``Neonatal Lupus''?
No, Neonatal Lupus is not a diagnosis for adults. It is only diagnosed in fetuses and infants. Neonatal Lupus is not the same as adult lupus.
Systemic Lupus Erythematosus (SLE), which we commonly call lupus, is an autoimmune condition that affects both children and adults. SLE is systemic, meaning it affects the entire body and requires lifelong treatment and monitoring.
Neonatal Lupus only affects the first few months of a baby's life. It does not develop later in childhood or into adulthood.
However, Neonatal Lupus can have long-term effects on a person's body, even if it is not diagnosed until after birth. The most serious complication is heart block, which can require a lifelong pacemaker. Some research suggests that babies who have Neonatal Lupus may be at an increased risk of developing autoimmune diseases later in life.
If you had Neonatal Lupus as a child, talk to your doctor to find out what kind of monitoring or testing you may need as you get older.
When you are pregnant and receive a neonatal diagnosis like this, it can be overwhelming and worrying. It can be really difficult not knowing what will happen as your pregnancy progresses. There is nothing wrong with sharing your fears and concerns with your medical team. They will do everything they can to help you understand what is happening and what you can do to help you have a healthy pregnancy.
If your baby is diagnosed after birth, they may need to be monitored throughout the first month of life to check their heart function. They may also have skin lesions that last for several months. Your baby's medical team will explain what to expect and provide support for you and the whole family.
Things we need to remember from this story
Okay, so let's recap some of the most important facts about Neonatal Lupus that we talked about:
- Neonatal Lupus is a condition that occurs in newborn babies due to special antibodies passed from the mother to the baby.
- This is not the same as lupus (SLE) that occurs in adults.
- Most of the time, the symptoms are temporary and harmless, such as skin lesions. These will heal within 6-9 months.
- However, some babies can develop a serious condition called congenital heart block, which may require a pacemaker.
- If the mother has an autoimmune disease, or if she has specific antibodies (anti-SSA, anti-SSB), it is very important to discuss this with the doctor during pregnancy.
- Most babies recover completely from this condition. If heart problems occur, they can be treated.
- If you have any questions or doubts, don't be afraid to ask the doctor. They are there to help you.
` Neonatal Lupus, newborns, infant diseases, heart block, autoimmunity, maternal antibodies, skin rash
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