Lori's story

"My Daughter and What I Hope For Her in the Next Century"

Like people the world over, I hope for world peace, an end to violence in our schools, tolerance of others…but mostly, on a deeply personal level, I hope there will be a cure for a little known - but statistically high - disease of pregnancy called HELLP Syndrome.

Ever since I was a little girl I wanted to be a mother. When asked, in my early twenties, if I only had one year to live, what would I do with that year? I said I would get pregnant and have a baby. The road to motherhood was a rocky one.

In 1993, after more than two years of infertility treatment which involved traveling hundreds of miles for treatment, surgery, injectable medications, and intrauterine inseminations, I finally conceived. As a matter of fact, my doctor called my husband and me on Thanksgiving morning to deliver the happy news himself, giving us a new reason for giving thanks. Our baby was due in August 1994. After all the trouble I had endured to conceive, I felt sure I would have a problem-free pregnancy. Even when my pregnancy became complicated, necessitating bedrest for several weeks, I felt positive, again, that I would have a problem-free delivery.

That calm assuredness was shattered without warning with a sudden dangerous elevation of my blood pressure several weeks before my due date. On Monday, July 11, 1994, five weeks before my due date, I was induced because my blood pressure was rising dangerously high.

The induction began early that morning, and I progressed slowly. Evening found me still in the delivery room, but finally, at 9:00 p.m. I was told to start pushing. Then more frightening news: It was discovered while pushing that the baby was breech. The minutes seemed an eternity until my precious, tiny (3 lbs., 14 oz.) daughter, Emily Elizabeth, entered the world - not breathing.

The doctors responded immediately with a Code Pink alert and Emily was resuscitated. So tiny, but otherwise healthy after an uncertain start. I don't really remember much about the entire day because of all the medications, but I do remember the doctor saying "It's a girl!" - I was sure it was a boy! So much for mother's instinct!

The next morning, around 11:00 a.m., I began to have seizures, and was categorized as having HELLP Syndrome. My family would tell you it was touch and go and very scary. I can't remember much. I do know that although having Emily in my life is the best thing I ever did, since then I have had one health concern after another. Many of my doctors feel these health problems are related to having had HELLP.

My hope is this - I want a specific cure for HELLP Syndrome. I want a known cause. I want women to not have to worry about this disease. Not only do they have cures for some forms of cancer, but they have causes. HELLP has stumped the medical community, and I do not want my daughter, who now has an increased risk because of me, to have to experience this disease. I want her to enjoy her pregnancies and to have as many babies as she wants. Fear has kept me from having more. I desperately want another baby, but with infertility treatment needed, and the constant fear of developing preeclampsia or HELLP, I have put any plans on hold for now.

Ironically, I remember thinking when I got pregnant that nowadays women don't die from pregnancy like they did in the old days. I was wrong. Childbearing mothers do not die in the great numbers as they did in the past, but preeclampsia/HELLP remains the main cause of maternal death in the United States. HELLP Syndrome is also one of the main causes of infant prematurity and mortality. I know that I am extremely blessed that my outcome was a positive one.

Lori