The Fear of Waiting

A Personal Experience With Pregnancy and Autoimmune Disease

The joy of seeing that positive pink line appear was overwhelming. After sitting in anticipation, the moment had finally arrived. I was pregnant.

As instructed by my rheumatologist, I informed him immediately of the exciting news. A sufferer of the autoimmune disease, Sjogren's Syndrome (very similar to the more well-known Lupus), seeing the rheumatologist before the obstetrician is a necessary step in the beginning of pregnancy to be sure I was well informed of what to expect.

The Risks

Going into the process, I knew that my disease posed risks to the unborn baby. The least of these risks is neonatal lupus which is when the antibodies affect the fetus, causing them to suffer from lupus-type symptoms both in the womb and during their first months of life. While it does not cause any major complications, it leads to discomfort in the new life.

While the idea of my baby being uncomfortable is certainly unpleasant, my fear lay more in the potential heart condition Sjogren's Syndrome could cause in the baby. The same antibodies that can lead to neonatal lupus can also lead to the much worse scenario of congenital heart block, drastically affecting the rhythm of the tiny developing heart. The outlook of a child born with this defect is far from positive.

The Wait

The hardest part of this news is the wait. While it is impossible to know whether or not the child has neonatal lupus until birth, I was required to have a very thorough ultrasound to check the status of the baby's heart but this could not occur until at least 20 weeks into the pregnancy.

So for 20 weeks, I enjoyed the excitement of carrying a new life. We went through all the necessary prenatal visits, browsed through newborn clothing racks and giddily discussed names for a boy or a girl. All the while, the fear lingered in the back of my mind. I worried about the remainder of the pregnancy and the possibility of an extreme change in prenatal care if things turned negative.

I did all I could while I waited for that 20 week appointment to arrive. I exercised regularly and was sure to stay on top of my Sjogren's-specific diet. I read as much information as I could find, but learned there was really very little I could do. I just had to wait and hope.

The News

Finally, when the day arrived to have my ultrasound, I was terrified. I wanted to know but I was scared to hear. After the ultrasound technician spent time showing us the beautiful life we had created, she worked quietly going through all the images of the heart.

The results: as far as they could tell, the baby's heart was perfect. No abnormalities detected.

The wait was so difficult and the fear was overwhelming, but finally I could rest peacefully knowing that my autoimmune disease did not cause the worst for our newest addition. The discomfort of neonatal lupus now seemed like a breeze.

The medical community has come so far in learning about autoimmune diseases, specifically related to pregnancy, but they certainly have much further to come. At this point, I take comfort in knowing we have the technology of detection. No matter what the outcome had been, it is wonderful knowing that there were options and there were possibilities that can lead to more hopeful chances.

But when the fear of the future is lingering, the waiting is certainly the hardest part.