English
Arabic
Dutch
Italian
SpanishNeonatal Lupus occurs in a fetus due to the mother’s autoantibodies. Antibodies cross the placenta and damage different parts of the fetus’ body. The most serious complication is Complete/ Third degree Atroventricular Block in which the electrical conduction Within the heart is damaged.
ABOUT DISEASE
After the onset of CHB, hydrops can occur due to heart failure and lead to death of the fetus if it is too early for birth. The only intervention for third degree heart block is placement of a pacemaker after birth. Neonatal Lupus rash is not serious and will go away on its own.
SYMPTOMS
+ Neonatal Lupus rash
+ Hydrops Fetalis
+ Congenital Complete Heart Block
+ Learning disabilities
YOUR POINT OF CONTACT
ASHLEY
ABOUT | I was first diagnosed with Sjogrens, rheumatoid arthritis, and leukocytoclastic vasculitis after my son was born in 2016. My daughter Sadie was diagnosed in 2018 with complete heart block at 20 weeks, and she was given very little chance for survival. Through rigorous experimental treatments, she made it to 37 weeks and was placed with a pacemaker at 2 days old.
AUTOIMMUNE DISEASES | Sjogrens, rheumatoid arthritis, and leukocytoclastic vasculitis
SPECIALISTS
+ Rheumatologist
+ Dermatologist
+ Physical Therapist
BLOOD TESTS
+ Creatine kinase (CK) – 1x/month
+ C-Reactive Protein (CRP) – 1x/month
+ Sedimentation Rate (ESR) – 1x/month
+ Aldolase – 1x/month
+ Myosotis Assessor + Jo 1 antibody – initial
MEDICATIONS
+ Prednisone
+ Methotrexate
+ Azathioprine
METHODS OF HEALING
FROM ASHLEY
During my first pregnancy, it was suspected my son had a heart problem and I was tested for Sjogren’s antibodies and found to be positive. I was diagnosed with Sjogren’s, leukocytoclastic vasculitis, and Rheumatoid Arthritis. Luckily his heart was fine, but during my pregnancy with my daughter two years later, my Sjogren’s autoantibodies caused her to have neonatal lupus with congenital complete heart block being the worst complication. Following her birth, I was diagnosed with Graves’ disease as well. My daughter had a pacemaker placed at 2 days old, which she will have the rest of her life.
| I found tremendous support through social media during my daughter’s diagnosis. I have had many moms reach out to me to hear about my daughter’s experience and ask for advice. I love to support and help others and I have done a ton of research, so I can do my best to help with any questions. |
AUTOIMMUNE RESOURCES
Here are some great websites, authors, podcasts and other resources to help you navigate your Autoimmune Disease.
AUTOIMMUNE STORIES
These are the women that have shared their autoimmune journey with us. Please take a moment to read some of their brave, honest and revealing stories about their diagnosis, successes, hardships and their lives.
