|Neonatal 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. 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.|
+ Neonatal Lupus rash
+ Congenital Complete Heart Block
+ Learning disabilities
+ Hydrops Fetalis
+ Electro physicist
N/A unless other heart complications
+ For mother: plaquenil
+ IVIG infusions
METHODS OF HEALING
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.|
HAVE QUESTIONS OR NEED MORE SUPPORT?
ABOUT ASHLEY |
|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.|
Their stories are brave, honest and intimately revealing of their diagnosis, their successes, their hardships and their lives. Sharing their stories allows them to put words to their journey while providing inspiration to others with an autoimmune disease.