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Laura's Story

    Hi, my name is Laura.  I am a 37 year old single mom and have two sons ages 17 and 7.  I work full-time as a secretary and I have primary Sjogren's Syndrome along with a yet undiagnosed mystery muscle disease.

     My story really begins around 1989, but the most significant events center around my second pregnancy in 1994.

     In 1989, at the age of 25, I began having various symptoms that always seemed to disappear by the time a doctor's appointment rolled around.  I complained of bone weary fatigue so much that blood was drawn routinely to look for anemia.  I wasn't anemic.  My stomach would painfully growl and gurgle for days and weeks and I'd loose weight because the thought of eating was unpleasant.  Several upper GI's were ordered to look for ulcers-no ulcers.  I lost 11 lbs., in a very short period of time one time and later developed ulcers, but they were in my mouth.  I was told to stop eating spicy foods.  I began having migraines for the first time that year.  Here, I was told, take these at the onset.  I developed endometriosis and eventually had three separate surgeries (one a year) to remove lesions and tissue build up in my abdomen.  I got hives, but only at night!  I often left work feeling as though I was coming down with the flu-fever, chills, body aches, fatigue-but after a good nights rest I would feel fine again.  I was a regular at the dentists office with complaints of bleeding gums and painful teeth, but I was made to feel guilty on every occasion because he said I, "must not be brushing and flossing properly or I wouldn't have so many cavities."  All of these symptoms were spread out over a 5-6 year period of time, so in a way I don't blame my doctor for not figuring it out.  The clues, however, became more insistent as time wore on, but I certainly didn't know what they meant.

     While vacationing in Hawaii in 1992, I laid out by the hotel pool to soak up some Maui sun.  By day three of the vacation my face had broken out in several places with painful raised dime shaped red rashes.  I just figured it was an allergic reaction to an ingredient in my sun block.  The rashes stung each time I tried to soothe them with moisturizer so I gave up and stayed inside as much as possible for the rest of the trip. On day 5, I developed a small white ulcer on my gums in my lower jaw just behind my front teeth.  The ulcer grew, lengthened and deepened each day.  I tried every topical ointment they had on the island but nothing seemed to help.

     Forward to 1993-I got married for the second time in my life and felt much better mentally, physically and emotionally.  You just don't seem to notice fatigue when you're giddy!  But by August the endometriosis cranked up again and I needed more surgery.  But then in April of 1994, I got the glorious news that I was pregnant.  My due date was New Year's Eve!  I panicked a little wondering how we would all make it through the holidays with a baby due at any time but that changed later on.

     July 4th weekend I took my son and stepson to the beach for a little R&R-I was four months pregnant.  I supervised the children and enjoyed the warmth of the sun but was only in direct sun for 20 minutes.  A few days later the rash came back but this time with a vengeance.  This time it was much larger and covered a wider area. It was just as painful as the first one.  This rash went from my left cheek, across my nose and over to my right cheek.  I found out much later it was called a "butterfly" rash-typical symptom with several autoimmune diseases.  I thought very seriously about going to see a dermatologist but decided against it since I worked for a boss who never gets sick and didn't appreciate the need for doctors.  The rash lasted for two weeks.

     In August I went in for a monthly OB checkup and everything looked fine to the doctor except that he was unable to pick up the baby's heartbeat-he said all he could hear was mine.  We didn't think much of it at the time.  Then in September he said the same thing.  This time he seemed very concerned and asked if I'd stick around to have an ultrasound.  It showed a perfectly formed baby boy with a heart that was beating much too slow.  "Normal fetal heart rate should be between 130-160 per minute," he said, my son's heart was only beating 48 beats per minute.  I didn't know what that meant and the saddest thing of all was neither did he.  He immediately called the University of Florida, Shands Teaching Hospital-150 miles away and made me an appointment for the very next morning with an OB specialist.  His parting comment was, "something is seriously wrong with his heart, if it's too serious they won't try to save him since you're not very far along."  But I was 25 weeks pregnant, I was already past the halfway point!  I numbly walked out to my car and drove home crying great gut wrenching sobs like I've never cried before in my life.

     The next morning at Shands I was sent to labor and delivery for another ultrasound.  A 3rd year resident came in, looked at the ultrasound and asked only one question, "Do you have Lupus?"  He didn't wait for an answer.  He ordered a full blood panel and put a rush on it.  We were then ushered to a place they called the Women's Clinic-Shands is a teaching hospital with doctor offices in an attached separate building.  I was introduced to my new OB and another ultrasound was done.  By the time my son was born I was proficient at reading ultrasound pictures!  The new doctor told me to go to a motel for the night and to come back in the morning when hopefully they'd have my blood test results back and we could discuss everything further.  I was a walking zombie.  But I also prayed the prayer that saved my sanity.  I asked God that very first night to take this off my shoulders because it was too much for me to bare, and he did.  I was numb, but I had peace.

     At the Women's Clinic the next morning we were introduced to a team of doctors.  There was a neonatologist, a pediatric cardiologist, a rheumatologist, and a handful of eager residents who wore bereaved faces but who were bubbling with barely contained excitement.  In the weeks to come I was made to feel very special (red carpet treatment), so I never minded the constant parade of students who came into the exam rooms to watch.  I came to realize these students wanted and needed, for the sake of experience, to see each step of the process, but it was also easy to read in their faces that they felt guilty about being in on a very personal and emotional part of another human beings' life.  We all crowded into a very small conference room where my new OB began without pause by saying, "You have Lupus and your baby has a rare condition called complete heart block."  He swept the Lupus issue out of the way and began talking about my son's condition and prognosis.

     Through the blood tests it was revealed that I carry the Anti-Ro or Anti-SSA antibody that is responsible for causing this condition in fetuses.  An antibody found in Sjogren's Syndrome as well as some other types of autoimmune diseases.  The antibody passes from the mother to fetus and damages the electrical system in the baby's heart by enveloping or coating the electrical wires thereby insulating them and blocking their signal.  The upper chamber and lower chamber are then unable to "talk" to each other.  Since the lower chamber doesn't get the signal telling it what rate to beat, it just plods along at a slow pace.  The upper chamber continues to beat at a normal rate.

     We were told that our son would be born early and that he would have to be born there at Shands because they had a level 3 or high risk nursery; he would need a pacemaker at some point, either at birth or within the first two years of life and his surgery would be performed there as well.  If he didn't get the pacemaker at birth he would have to be watched for signs of congestive heart failure.  I began receiving shots of Betamethasone twice a week to mature his lungs for an early delivery and started taking Prednisone to prevent any further damage.  Prednisone wreaked havoc on my system causing gestational diabetes and pulmonary edema (but I was wide awake at 4 a.m.) so the OB took me off of it.

     Then one night I got up to go to the bathroom, as all pregnant women have to do, but my left eye hurt so much I couldn't open it.  If you've ever scratched your eye, then you know what kind of pain I'm talking about.  It felt like I had sand or grit in it.  I pried it open with my fingers to look for foreign matter and even washed it out but nothing helped.  This happened every night after that until shortly after my son was born.

     I had to take two days a week off from work to drive the 300 mile round trip for OB checkups at Shands.  My boss wasn't too pleased that I was missing two days of work per week.  Then one Thursday in November, at the beginning of my 33rd week of pregnancy, my doctor told me I was losing amniotic fluid and that we'd have to watch that more closely.  When I went in the following Monday it was determined that my son was in congestive heart failure and would have to be taken by cesarean as soon as possible.  An amniocentesis revealed that his lungs had matured so a c-section was scheduled for 7:30 the next morning.  The delivery was delayed by several hours because my file was missing and the operating room staff was not aware that I was allergic to latex...another bizarre symptom I've had.

     Cody, my sweet little miracle was born at 2:30 that afternoon but was whisked immediately to the nursery.  I was later told his prognosis had been grave and that the doctors had not expected him to live through the night.  He weighed just 4 lbs., 4 ozs., and lost down to 3 lbs., 10 ozs.  After just 16 days he was released.  I had to watch him daily for signs of congestive heart failure which thankfully never came.  At 10 months his heart rate dropped to 40-a sign that it was time for a pacemaker.  Again my little trooper showed his tough side and was home after only four days.  Cody, The Code, or Codeman, as most people like to call him, will turn 8 this year.  Ok, so he only weighs 44lbs., but he's 4'1" tall!  He's a beanpole but so was I.  He's a feisty little red head with beautiful gray eyes.  He loves all kinds of sports, but will never be allowed to play the one sport he loves the most-football.  Otherwise, his heart beats normally now.  Guilt stayed with me for well over a year after he was born, but it's gone now.  There are no signs of that early struggle as I watch him shoot baskets in the driveway, score soccer goals for his team or smile big as all outdoors because he's the first kid on his T-ball team to hit a coach pitched baseball.  Cody is on his 3rd pacemaker but his most recent checkup (we still have to go to Shands) was a good one and it looks like this one might last another 4 years before it will need to be replaced.  What a blessing...in more ways than one.

Story Copyright © 1998-2007 Laura

Page Design Copyright © 1998-2007 Lynne Messina