Welcome Friends

Elizabeth's Story

I am a 33 year old wife and mother of two wonderful children. I have a 4 year old son who was born with complete heart block and a 2 year old daughter who is healthy. My story and symptoms are very much the same as many people with Sjogren's so I would mainly like to share with you my story about my children.

My first encounter with Sjogren's symptoms was only a month after being married in '93. I began having very strange and frequent illnesses which was uncharacteristic for me. I started having parotid gland swelling which sent me to four different doctors and the emergency room twice. Since I have suffered from migraines all my life I thought I could deal with the pain associated with the parotid infection and twice let it go too far and developed septicemia ( a systemic type toxicity in the body). After all these encounters and nearly two years of trips to different doctors and lots of tests I still did not have a legitimate diagnosis. They even tried to tell me I had the mumps, 8 times (ha ha).

My symptoms subsided and I finally was able to become pregnant with my first child (after 2 miscarriages and a year and a half of fertility treatment). My pregnancy was fabulous. I was having a great time and loving being pregnant when during my 32nd week of pregnancy (and 5 days after burying my beloved grandfather) during a routine checkup the doctor was unable to find the baby's heart beat. He immediately did an ultrasound and discovered the baby had a very slow heart rate. He sent me immediately to a nearby hospital to a Maternal-Fetal specialist. They did a fetal echo cardiogram and made a diagnosis of 3rd degree or complete heart block. The doctors said the heart appeared normal and so I must have some sort of auto-immune disorder which causes the AV node in the conduction system of the baby's heart to inflame and scar, therefore cutting off communication between the top and bottom chambers of the heart causing them to beat independently. I had blood drawn that evening and was sent home to wait.

It took a week for results to come back and that is when I finally learned that I had Sjogren's Syndrome. They said I had certain blood markers from the Sjogren's that caused the damage to the baby's heart, but what I heard was that my own body was responsible for destroying my unborn son's heart and that he may die because of me. I know now that I was a little irrational, however, no matter what amount of pain the Sjogren's causes me in the future, there will never be a physical pain greater than the emotional pain I felt that day, and every day since. We are so very fortunate in that our son is doing exceptionally well, and has not had any trouble so far. He has had no pacemaker or any other type of intervention, which is basically unheard of with a heart problem of his severity. That goes to show you how powerful prayer can be! We were advised not to have more children, but I felt a certain peace about my decision to have one more child. I became pregnant 7 months later and in my 20th week of pregnancy I was put on steroids to help avoid heart block in this baby. Things went well until my 28th week at which time I developed a severe reaction to the steroids or their components. I was either to go off the steroids immediately and take a chance that my daughter would develop heart block or live with hives for 12 more weeks and take Benadryl every four hours. I chose hives. After a small bout with insanity from the itching I delivered a healthy baby girl.

Things have gone well for me up until a few months ago when my Sjogren's symptoms came back with a vengeance. My rheumatologist is about at wits end with me, and I am considering going to a facility that specializes in Sjogren's treatment. Because I have been so horribly sick for several months the doctors have decided to do a biopsy to rule out the Sjogren's related lymphoma which I am not familiar with. Regardless of the results I am feeling truly blessed and do not ever let this crazy illness get the best of me. I don't talk about it much with anyone but my husband because after a while people seem to get tired of hearing about the negative things, which you all know there seem to be a lot of. That is why I am thrilled to have people with similar problems to share stories with. Thanks for taking the time to hear my story. I am sure it will have a happy ending!

Disclaimer

The author of this page does not promote, support, or recommend any particular treatment or medication for any medical condition. The opinions expressed in stories or links are the responsibility of their authors. No treatment should be undertaken without the supervision of a physician.