A nursery with a hanging mobile showing purple lupus butterflies smiling.

Neonatal Lupus

Getting pregnant with lupus you always wonder about the what-ifs of what would happen? What will happen if I decided to get pregnant? Can I get pregnant? Will my condition affect my child? Will I have a safe pregnancy? Is my lupus genetic? There are plenty of questions parents ask and way more.

Dealing with a condition that surprises you, as a parent you can only help but wonder, "When I get pregnant will my child come out with an impairment or a disability?" It's even harder because everyone around you feels that it's not safe for you to have a baby anyway or it's not possible to have a baby. It is possible you just have to take the natural precautions to have one.

What is neonatal lupus?

Neonatal lupus is a rare acquired autoimmune disorder that is present at birth. It can show as a rash and has the potential to cause congenital heart block. Sometimes the symptoms go away with age and the child won't have the disease anymore, according to Rarediseases.org. Neonatal lupus can only be found in babies, not adults. It's rare, though, that a baby is diagnosed with lupus even if the mother has lupus also.

Neonatal lupus screening

It is possible to have a perfectly healthy baby. While pregnant, you will have to see all the doctors every week. When the child is born, they will need to see a cardiologist and rheumatologist just to confirm the baby did not come out with any abnormalities.

From experience, when you are a parent at the doctor's appointment with your child, and the doctor tells you that they want to run more tests, it can actually scare you. Now, you're wondering what is wrong with your child: "Is everything okay? Are they going to be ok? Are they going to have a normal life?" It's like seeing your life flash before your eyes.

My child's newborn tests

When my daughter was born, she was as healthy as ever. She just was born so small to be a full-term baby. But she is reaching all her milestones. Yes, we had scares like her having to get an ultrasound on her hip because they thought her hips were uneven, or when they said they heard a heart murmur. No one wants their child to have to experience anything that would be traumatic towards them. She is fine but as a parent, you would not want your child to experience everything that you went through as an individual.

During my pregnancy, they took an echocardiogram just to check and make sure her heart was fine and doing well. Another echo was one just to make sure her heart was not having any issues and that one came back perfectly fine. The doctor said they heard a heart murmur, but I do not feel too fearful. That’s the doctor's job to make sure she is fine. So I was willing for them to run any test they wanted. My daughter's heart was fine and he said he would never have to see her again. Now I know my daughter is healthy but neonatal lupus can be very rare in most babies.

By providing your email address, you are agreeing to our privacy policy. We never sell or share your email address.

More on this topic

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Lupus.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

or create an account to comment.