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A Caregiver's Story, Scleroderma
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Coping With Autoimmunity
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Fibromyalgia Talks To You
Hypothyroidism, Low Thyroid Condition
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Life With SLE
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Lupus Knows No Boundries
Lupus, Scleroderma & Raynaud's
Lupus, I Just Want To Be Normal
Multiple Sclerosis, Diane's Story
Polyarteritis Nodosa, "My Old Doctor Is History"
Polyarteritis Nodosa, Winning The Battle
Pregnancy Loss and Lupus, This Is My Story
Raynaud's Phenomenon: Cold Hands, Warm Heart
Recovering From Depression

This Is My Story

Submitted by: Carleene, Fort Meade, Fl


For as long  as I  can remember I wanted to be a mother. I thought I was a healthy  young female.  Little did I know I was carrying the Lupus Anti-Body.  It was the early 80's. I  had never heard of Lupus let alone an  anti-body. By the time I turned 30  I was still childless  even though my husband and I tried for years. I set a goal for myself to  become pregnant before  I turned 35 because my biological clock was ticking away.

I  searched for a doctor who could help me and my husband make it  happen. The  doctor we found decided fertility drugs might be the answer. After  a  short physical exam he prescribed fertility pills. No blood  tests were ordered  at this time. This is an important fact to  keep in mind as you read on.

The year was 1982. I remember  standing in front of the pharmacy with the  fertility prescription  in hand and looking at my husband, saying "Are you sure  we should  do this? This will probably change our lives' forever". He nodded  his  head and so we stepped inside the pharmacy and had the prescription  filled.

Within five days after taking the pills my mind  and body went hay-wire.  I now know that the sudden increase in  hormones from the fertility drug was the  culprit. But I did get  pregnant the first month.

When the pregnancy  tests came  back positive I was on Cloud Nine. I could not believe  it. I  couldn't wait to wear the cute maternity shirts and show  off my belly. I wanted  to tell the world...."Hey, I'm going to  have a baby".

But I still  doubted myself. I remember,  about the 4th month of the pregnancy, laying on the  exam table  at my OB's office and asking him if it was possible I was really not pregnant? Could this just be all in my head,  like a false  pregnancy? At that very moment my OB placed his magic  wand over my tummy and  turned up the volume. He said "If this  is a false pregnancy, what is this?" I  questioned what it was  too and then suddenly I realized it was the sound of my  baby's  heart beat.

Talk about excitement and overwhelming happiness.  It  was the most wonderful sound I had ever heard. To this day,  I still remember the  sound of each and every beautiful beat. After  leaving the doctor's office I ran  to the closest telephone and  called my husband and then everyone else I could  think of. I was  well on my way, finally, to becoming a Mommy. I was about to  give  my husband a child, maybe even a son, to carry on his name.

Our  Christmas that year was filled with hopes and dreams for our new life as  parents as we  were expecting the following Spring. I was feeling great even  though  I had morning sickness all during the day. But that was OK. To me,  that  meant everything was working as should be. I also had cravings for things like raw  potatoes, noodles, tuna and McDonald's cheeseburgers  with tons of fries stuffed  inside. Gosh, life was good.

My  tummy continued to grow. I felt our baby  move for the first  time in early January.  Another mile-stone passed successfully and with such  delight even  though, at first, I wasn't sure what that tingling was.

We  started buying some of the many essentials needed for our baby along with  the little  cute things. Little tiny booties, for example, my husband  bought,  I treasured with anticipation and still have to this day. The booties  have little green and white checkers on them with silk, green  bows (my husband  was of Irish descent).

It was late January  and another trip to the OB.  This time I wanted my husband along  so he could hear the heart beat too. The  doctor searched and searched,  all over my tummy, to no avail. He told us the  baby was probably  just laying far back into my tummy and so the reason he was  unable  to find the heart beat. We were so disappointed. He decided I needed  an  ultra-sound because he thought the baby was not quit the size  it should be at  this stage of the pregnancy.

For some reason, I don't remember  why, the ultra-sound was  not scheduled until several weeks later.  Everyday was pure hell as I waited and  waited for the day  to arrive for the  test and worried what that  test might reveal. Each day I monitored any movement.  Some days,  I felt none. Thus, the fear and worry mounted. Then, a few days  before the test was scheduled, I passed a large blood clot.

I  called the  doctor, immediately. His nurse told me to just lay  down as much as possible...  That was it. Later that evening I  felt pain in my abdomen. The pain became  stronger with each passing  hour. I called the doctor's office again and was told  to just  stay in bed. I started watching the clock and noticed that the pain  was  happening on a timely bases. I asked myself, "is this labor,  is this what it  feels like?".

It wasn't long after that  I felt a lot of pressure and a  strong urge to push. I thought  it was a bowel movement and so into the bathroom  I went. When  I sat down and pushed out gushed a huge amount of what I thought  was slightly bloody urine. (I learned, later, my water had broke).  I also felt  something coming out of my body so I put my hand down  to feel what it was. I  wasn't sure so I took a hand mirror and  looked.

What I saw remains with  me, even to this day.  It was this little tiny leg with a tiny foot and cute  little toes.  It was my baby. I screamed for my husband. He ran into the bathroom  and looked then  turned around and faced the wall pounding his  fists against the wall and  shouting, "No, No".

Another  call went out to the doctor. We were told to  go the the Emergency  Room at the hospital I was scheduled to deliver at and my  doctor  would meet us there. As my husband drove towards the hospital I  sat on  the passenger side feeling the part of my baby I was now  sitting on. I tried not  to sit all the way down on the seat so  not to hurt my baby.

Finally we  arrived at the hospital.  The ER nurse told my husband we would need to wait  before being  seen. I remember my husband screaming out "My God, my wife is  having  her baby, NOW! I was six months into the pregnancy.

Shortly  I was  rushed into a room. My doctor arrived and attempted to deliver  my baby. It hurt  so bad and all his pulling and tugging was so  painful. I remember thinking,  "Just get it out of there!" I could  feel his hands way up into my belly,  pulling, tugging. Then I  heard the sound of instruments. It wasn't long after  that our  baby was delivered. My doctor covered the baby with sheets and said  "You don't want to see this". He then handed the bundle over to  a nurse who  rushed out of the room carrying my baby.

Soon  after that I was admitted  into the hospital and scheduled for a procedure  to clean out my uterus. No word about my  baby, where it was, what  it was, but I knew it had died. I was too naive. I  didn't understand.  I didn't understand my patient's rights. Before I knew it, my  baby  was sent to a lab for evaluation. We were told we would know the lab results  within  a few weeks. Within a few days I was released from the hospital  and sent  home.

Home, without my baby. Oh, the mental pain.  I felt as though my  whole world had ended. I remember sitting  and moaning, out loud, in grief. The  absence of my baby was horrible.  Thus, our lives had changed,  forever.

Within  weeks the lab report came in. For the first time my  husband and I knew  we had a baby girl. The baby was normal in every way. But  what  had they done with my baby? I soon came to realize my baby was disposed  of  by the hospital after the lab tests were finalized. It was  too late, too late for my baby. No  funeral, nothing! No place on earth for a memorial or even proof that  my baby even ever  existed. Just a bunch of medical terms on a  piece of paper.

I later  learned, after reading the lab  results over and over again, that the doctor had  to cut my baby  in half to remove her from my body. So explains why the doctor  did  not want me to see her.

Of course I wondered what had I  done to  cause this. The guilt was horrible. Blame, who should  I blame? Me or my husband?  I searched books, wrote letters to  specialists in a desperate attempt to explain  all of this. I got  letters from several specialists saying it was nothing I had  done  and that many first pregnancies end in miscarriage. Miscarriage?????  My  God, I was 6 months pregnant.

After several months  we tried for another chance at  having a baby. I got pregnant, this time, within 3  months of trying and without  the help of fertility drugs. That  pregnancy ended during the 4th month of  gestation. Still, no one  knew why I carried each baby well past the first  tri-mester and  past the danger zone but still ended in what was called a  spontaneous  abortion. That term really pissed me off. I never asked for this. Isn't that what  an abortion  is? What did spontaneous mean? What were they (the doctors) talking  about?

A few years later I started developing blood clots  in my right leg, for no apparent reason.  Finally, after being seen at one of the best  hospitals in the Mid West  (Barnes-Jewish Hospital, St. Louis),  everything was about to be explained.

Blood tests revealed  an abnormality in my blood. Further tests were  ordered, specialized  tests. The results, I had Lupus and the Lupus Anti-Body  which  explained much. It explained the difficultly I had getting pregnant  and  the lost pregnancies. My body was forming blood clots with  each pregnancy. Clots  that formed in each baby's cord, slowly  cutting off oxygen and nutrients to my  babies, thus resulting  in fetal loss well into each pregnancy, common to those  who have  the Lupus Anti-Body.

I was warned to never get pregnant  again  as it would probably result in my death too or at best,  extreme complications. I  was also told that by the time I reach  my late 40's, early 50's, I would have  full-flown Lupus. So, there  went any dreams of ever becoming a mother. But at  least I finally  had some answers, some understanding of "WHY"!!!!

I  share  my story with the reader in hopes to warn other young women  who are  planning to start a family. Much more is known now about  this abnormality. So,  if you are planning a family or newly pregnant,  ask your doctor to test for the Lupus Anti-Body.  If caught in time,  oftentimes an aspirin a day can prevent clotting and any  dangers  to your unborn resulting in a full term pregnancy with a happy ending.  The Lupus Anti-Body can remain undetected years before any signs  are noted.

If you are having trouble conceiving and/or  have had failed pregnancies,  get checked because these are some  of the symptoms of the Lupus Anti-Body  Disorder. Click  here for more  information about The Lupus Anti-Body and pregnancy.

In my case,  adoption was not an  option because my husband was not at all interested  in fathering someone else's  child. A way of thinking he now regrets.  But we were well into our late 40's  when he came to this new revelation  and our marriage was ending for various other  reasons.

It is  too late for me but not for possibly anyone reading my story who wants to have  children. I  have come to terms with my losses and know I will see my two  children  again, some day. I will be able to hold those babies for the very first time.



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