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Have you suffered from HELLP syndrome or had a pregnancy complicated by an underlying disorder? Discuss your concerns here

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Postby browncow » Fri Jun 11, 2004 06:46 am

I'm Lindy-38-in Tampa, FL, and my daughter Connor and I are HELLP Syndrome Survivors!

Connor was born November 19, 2001, on the cusp of 29 weeks due to my undiagnosed HELLP/Preeclampsia. She weighed 2 lbs., 7 oz. and had surgery for a collapsed lung, pneumonia, and sepsis before the end of her first day of life. I didn't see her until she was three days old, didn't hold her until she was ten days old.

Despite admonitions that my pregnancy weight gain was "normal," having lived in this skin for over three decades I knew better. I knew 36 pounds of water retention in two weeks wasn't any more normal than my eyes swelling shut, size ten feet not fitting into size 13 men's shoes, hands not folding or bending, lower abdominal pains, and upper chest quadrant pains and attacks lasting 20-60 minutes at a time.

Nothing in my pregnancy had seemed "normal," I'd spent the first four months so sick that I lost twelve pounds!!! About three weeks during the fifth month were (relatively) problem free but then gestational diabetes surfaced and HELLP Syndrome symptoms began (though I had no idea what was happening and the doctor didn't diagnose it).

Routine pregnancy tests on November 16 showed high levels of protein in my urine yet I still wasn't ordered to bed rest or referred to the hospital, rather I was scheduled for "follow and further testing" on November 19.

I spent the weekend of November 16-18 with horrible headaches (like sinus pain X 2 million), periodic loss of vision and blackouts, extreme edema, bouts of nausea and dizziness (similar to constant motion sickness), and upper chest pains that extended down my left arm and cut off my oxygen.

Aound 12:30 a.m. on November 19, I had a chest pain attack that worsened with each passing second and my usually active baby suddenly stopped moving. I'd nicknamed Connor "Mini Mia" because she kicked like soccer star Mia Hamm.

I knew I wouldn't live to make the morning's Dr. appointment if I didn't call 911 immediately.

Emergency medical services arrived within seven minutes of my call. I remember being loaded into the ambulance and a tech checking my blood pressure, screaming, "holy ****, she's 270/180, GO NOW!"

We drove the three blocks to Tampa General Hospital and the last thing I recall is seeing the ER doors. At that time I went unconscious, began seizuring, the placenta had separated and my baby was in oxygen distress. I was given Versed to control the seizures and once my blood pressure was lowered to 240/160, an emergency c-section was performed.

During the incision I had a seizure, my liver burst, and I bit my tongue in half (yes, literally in half). My daughter was removed and immediately taken to the NICU. I spent the next few hours in surgery being pieced together like Frankenstein.

I awoke in the ICU around noon, oblivious to what'd transpired hours earlier. I thought I'd been put to sleep to lower my blood pressure, not realizing that morphine was flowing through the right arm while transfusions were pumped into the left. I looked around the room and drifted back to sleep.

Later that evening I was roused by my doctor, he produced a polaroid photo and said, "here's your daughter." My medicated mind couldn't reconcile that the baby in the photo was the same baby I'd seen days earlier in a sonogram. "That's not mine," I replied, and slid back into unconsciousness.

Little did I know that as I denied my child's birth, she was in the NICU undergoing life saving surgery. Post-op, she was one of the first babies in central Florida to participate in water brathing treatments rather than breathing straight oxygen. The treatment simulated womblike breathing conditions, expedited recovery, and reduced the risks of straight oxygen administered to premature lungs.

I was awakened the next day by COnnor's father, he'd shown up drunk and beat me, shouting, "get up, you're costing me money!" He was promptly escorted off the property by hospital security.

Day three found me moved to a semi-private room with the realization that I was now the critically ill parent of a critically ill child. I begged nurses to take me to the NICU and waited six hours for the request to be honored.

When I finally saw Connor, I was overwhelmed by the tubes in her forehead, nose, mouth, chest, arms, and ankles. She'd dropped down to 1 lb., 7 oz., and was 12 inches longs. Her color was an angry boiled red save for jaundiced patches and her eyes were covered with a mask. I wasn't allowed to touch her and as I laid my head on her isolette, a nurse walked by and said, "don't get attached to her unless she lives for two weeks."

How could I not be attached, she'd grown inside of me for almost seven months?!? Prior to seeing her I was afraid to bond lest she die in my arms but upon first site there was no way could I turn my back on someone so tiny, precious, helpless, and mine.

I'm an adopted person and Connor was my first birth relative, the first person I'd ever seen who shared my blood and genes. The connection was undisputable.

Connor's "critical care" week improved with the miraculous water-breathing treatments. Her lungs healed, developed quickly and within ten days she was taken out of the enclosed isolette and placed in a semi-covered incubator. I was allowed to hold my ten-day old and didn't want to let her go.

I was discharged after 11 miserable days of rooming with a new mom who didn't want her baby in the room and couldn't understand how desperate I was to have mine. Connor's father didn't visit her or me, not even on Thanksgiving, I'd never felt more alone in my life.

My departure was horrible, the nurse brought the free carseat to me and I said, "I don't want that because I can't take my baby home." She replied, "well take it so you won't forget to come back and get her."

I've no idea how Tampa General managed to hire the most caustic, callous nurses on earth but suffice to say my patient satisfaction survey was not a glowing, stellar review.

I returned to the hospital the next day when my c-section ruptured open. Connor's father tossed me off of the couch so again, I was restapled and pieced together like Frankenstein.

The next two weeks were spent awaking early, dragging myself two blocks to the bus stop, and sitting with my daughter in the NICU. She developed an appetite and recovered from surgery but still wasn't strong enough to come home. She gained weight and no longer resembled a boiled lobster.

I got the call to "room in" with her when she was one month old! That meant I'd spend the night with her in the NICU and if all went well (no medical or other problems), I'd take her home the next morning. I called her dad at work and asked him to come, he chose to continue working.

I took the bus to the hospital and settled in for the evening with Scooty. She was 3 lbs., 5 oz., had no monitors or treatments to worry about, and was eating every two hours. I stayed up all night rocking her, holding her, feeding her, studying her. I was scared to death but overjoyed to finally have her.

We made it through the night and were officially discharged at 2:30 p.m. I called her father pick us up but he refused, choosing again to work. Connor and I took a cab home.

None of the clothes I'd purchased for her fit! A friend bought some doll clothes at Babies R Us and I purcahsed a puppy sweater at Wal-Mart so she'd have something warm! She was healthy and the doctor said, "take her out, enjoy her," so I did! People often thought she was a doll instead of an acutal, living baby.

She thrived from the moment she came home, her weight gain was slow but steady and we participated in a five month formula program for preemies through USF Pediatrics. In exchange for free cases of formula, free doctor visits, and Babies R Us gift certificates I journaled Connor's feedings, reactions to the formula, weighed and graded her poop (per color and consistency). The formula was ready-made, high caloric, and provided by the makers of NeoSure.

My recovery from surgery was slow and painful, stalled by the rupture of the c-section 11 days post-op. An incisional hernia formed 3 1/2 months later when scar tissue built up on the right side of the vertical scar. The doctor called the bulge Connor's twin he'd "left in" but I found no humor in that!

The Versed given to me for seizures caused some short term memory loss. I could vividly recall my fifth birthday party but shortly after bring Connor home from the hospital, couldn't remember how to make toast. I wanted buttered toast but just stood staring at the toaster, unsure of how to proceed. I was constantly afraid of forgetting something per Connor's care so I wrote post-it notes to myself whenever a memory or moment of clarity hit.

Connor's father established a pattern of nonparticipation and violence prior to her third month at which time I filed a Domestic Violence Injunction against him. He repeatedly violated the injunction and refused to help with Connor's care. On May 11, 2004, he was arrested for the seventh inuunction violation, violation of probation, and aggravated stalking (he was released from jail on May 1 and was found sleeping under our house later that evening). He is facing 3-5 years in prison per felony stalking charges.

Connor's birth coincided with my search for my birthmother. I began searching in the fall of 1999 (long after my adoptive parents were deceased) and made intitial contact with my birthmother in June, 2002.

On November 15, Connor and I flew from Tampa to Ohio to meet my birthmother and brothers and spent Connor's first birthday, November 19, celebrating with them. It was a surreal and incredible experience I'll never forget (and something I wish my adoptive parents could have experienced).

It's tough raising her by myself while dealing with what HELLP Syndrome's done to my body. HELLP left me with permanent liver damage and high blood pressure, I must watch what I eat and what medications I take lest my enzyme levels jack up, raise my blood pressure, and cause a stroke. I have autoimmune problems mimicking lupus, arthritis, and MS all at the same time, flare-ups are worse when I am menstruating.

Still, I know I'm blessed to survive this and have a great kid to boot!

Connor and I spent one year in an apartment riddled with toxic mold. We had health problems almost immediately after moving in, I spent the entire lease term begging the landlord to treat the mold but she steadfastly refused (to the point of denial). I contacted local media, city/county/state code enforcement and building inspection offices, and finally retained an attorney who had indoor air quality testing performed in the apartment.

The IAQ revealed levels of chaetomium (which is cultivated for biological warfare), stachybotrys, aspergillus, penicillium, and indoor humidity levels far exceeding acceptable guidelines. Most household fungi and bacteria levels hover between 5,000-6,000, not to exceed 6,500. We had levels/counts of toxic molds exceeding 2.8 million.

On August 3, 2003, Connor suffered a seizure, during which she actively seized for over eight minutes and stopped breathing. Lung cultures revealed the presence of stachbotrys and chaetomium. That information coupled with the indoor air quality test results form the lawsuit I've filed against the landlord. Connor fought too hard to live only to be poisoned by a neglegent landlord!

When confronted with Connor's medical records and told, "you wouldn't live this way," the landlord replied, "honey, I can afford not to." She told a news reporter that I was "white trash" and the apartment wouldn't be repaired or treated until I moved out. I then filed a omplaint against her with the State Division of Hotels and Restaurants which governs public lodging in Florida (including apartments, townhouses, and condominiums).

I'm telling you, no one poisons my baby and gets away with it! I worked too hard to get her here!!!

Connor is a happy, healthy toddler who counts to ten in Spanish and English, enjoys trips to the zoo and aquarium, has a new "boyfriend" every day, and bears no scars of "preemidom" or her harrowing first week of life. She's the reason I live, the reason I broke away from an abusive relationship, and the reason I pursue a better life for us each and every passing day!

browncow
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