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Our Stories-Our Stories-How to Share Your Story Anonymous SURVIVAL A MOM'S STORY OF CONTINUED EXISTENCE AND ENDURANCE We are all caught up in the "Survivor" shows and what humans will do to win the 'jackpot'. I would like to tell you my story, and what it takes for me to survive one day at a time. On April 28th, 1999, I was on Cloud 9, having given birth to a beautiful baby boy. I felt like I had just won a million dollars in the lottery. But on May 3, 1999 disaster struck! I had suffered a severe intercranial hemorrhage as a direct result of Eclampsia, a catastrophic illness many pregnant women know little or nothing about. I woke up on that fateful day, gave my son his first bath, made coffee for my husband before he left for work; and then suddenly my headache, which I had since delivering my son just five days earlier, became blinding. I asked my mom to watch my newborn and my 4-year old while I lay down. Shortly thereafter, my mom sent my daughter up to check on me since we had an appointment for my son's first visit with the pediatrician. I can still remember my daughter trying to talk to me. First, in her innocent curious voice, asking me what I was doing on the floor. Then when I didn't answer, because I couldn't, she began to get nervous. She asked me: "Mommy, what's wrong? Why aren't you talking to me?" I could hear the fear in her voice, and it was killing me that I could not explain to her what was wrong, because I myself could not understand what was happening to me. All I remember now is trying my best to get to the phone to call for help, and that is the last time I was able to stand or walk in the past two years. My daughter, now hysterical and screaming, thought I was having trouble hearing her so she kept repeating: "Mommy, please answer me, what's wrong?" She than ran downstairs crying frantically and said to my mom: "Nanny, I don't know how to tell you this, but my Mommy's dead!" My mom, almost scolding said: "Allyson, please, don't ever kid around like that…it's not funny." And Allyson replied, still sobbing: "Nanny, I mean it. She is lying on the floor with her eyes open. I tried talking to her, but she won't answer me." My mom who has suffered herself from several bouts of congestive heart failure rushed upstairs to see for herself what Allyson was trying to tell her. She found out Allyson, this brave, fragile little girl, was telling the truth about her 35-year old mother. My mom called 911, and the paramedics responded immediately, rushing me to a local Hospital Trauma Unit. A tracheotomy was performed, tubes were inserted in my head to relieve the pressure of the bleed on my brain, and after two days of life support, my husband was advised it would be best if he "pulled the plug" since I would probably be a 'vegetable' if in fact I did survive. Needless to say, another opinion was sought, and I was transferred to The Columbia Presbyterian Hospital in New York City. I am told that the surgeons who met the ambulance immediately started to change the tubes inserted into my brain, because they were too small and were clogged. They informed my family there was not a minute to waste in order to save my life: a craniotomy had to be performed immediately. After this, I suffered several strokes, seizures, and lay in a coma for 54 days, with tubes in almost every crevice of my body, oblivious to life around me. I did wake up, and spent the next 18 months in and out of hospitals and rehab centers. Because I was paralyzed, bed sores necessitated flap surgery on my back because the bacteria had spread to my coxic bone, a portion of which needed to be removed. I also underwent tendon release surgery. Not one month went by that I was not hospitalized because of urinary tract infections, pneumonia, sepsis, etc. I continued to have catheters, a stomach tube, and a trachea tube. 19-l/2 months later, I am finally home with my two kids, my husband and my family, without whose love and devotion I could never have made it this far. Although I remain paralyzed except for the use of my right arm, (I used to be left handed) I am cognitive, I can speak, and my beautiful baby boy is healthy and just going into the terrible two's, which makes me realize I am luckier than most people who have been afflicted with this tragedy. No one has been able to answer my question, "Why did this happen to me?" I had always been a 'fitness nut' carefully watching my diet, working out five times each week, going for annual physicals, etc. I've worked since I was 15 years old, and can count on one hand how many sick days I have ever taken. I think I did 'survive' so that I may make others more aware of the condition, which begins as toxemia or pre-eclampsia in pregnancy. Like me, I think many women whose feet swell, or who have rapid gain weight, or suffer from stomachaches put it off as part of the 'normal' symptoms of pregnancy. The first time that we became aware of the word Eclampsia was in the New York hospital, when the medical staff asked about the type of treatment I had received for my pre-eclampsia. Every test imaginable was done to see what other diagnosis could be made, but everything pointed to Eclampsia. My family was informed that my headache, which I had immediately after delivery on Wednesday, which continued to get more severe until Monday when the incident occurred, was all a part of the hemorrhage, which could have and SHOULD HAVE BEEN PREVENTED. If only a MRI had been performed in the hospital before discharging me after delivery, if only more attention was paid to my rapid weight gain and protein in the urine, stomach pains, and borderline hypertension during my pregnancy, IF ONLY I COULD WALK NOW AND TAKE CARE OF MY CHILDREN! I WANT MY LIFE BACK! My mom was given an article which appeared in a 1999 edition of Reader's Digest entitled: "Lena's Story", about a women and her baby who both died from the same condition. Why isn't the medical profession more aware or alert of the dangers of this horrendous life-threatening, life-changing catastrophic illness? I think the very worst part is that IT CAN BE PREVENTED!!! My OB/GYN had put me on a medical leave of absence from my employment when I was 7 months pregnant due to 'gestation hypertension'. I also had protein in the urine, pain in my abdomen, very swollen hands and feet, would gain 2 pounds overnight, -- all signs of pre-eclampsia. But of course, having complete faith in my doctor, I placed my life and safety, and that of my unborn child - in her hands. Now that I am able to find out more and more information about this condition, I wonder why she did not take my baby earlier rather than letting me go through a normal delivery, since from what I understand, early delivery by c-section is a certain prevention of this condition. If I can stop at least one other woman from suffering from this tragedy which my family and I must endure, I am happy. For now, I look to my 'earth angels' who have helped me with donations for those therapies Medicaid does not pay for, and continue to ask for support to help me with the hundreds of dollars of out-of-pocket monthly disbursements for my prescription drugs, and to help me save enough to purchase a customized van to accommodate a wheelchair so I may go out for doctor's appointments, etc. I must continue to fight, struggle, and survive and attempt to come back as far as I can to take care of myself and my children with some type of normalcy. I am trying to adjust to my life as a disabled wife and mom, but it is with extreme emotional and physical difficulties. Once again, I am also a S U R V I V O R, but unfortunately I can't compete for that million purse which would get me the therapies and equipment I so desperately need. I truly believe the only reason I survived was to tell my story. And while going to an island and vying for the top prize, is hard work and great entertainment for many of us, the real game of surviving is a lot more difficult to those of us who must endure one day at a time, without knowing if walking, or getting dressed ourselves, or changing our baby's diapers, or just holding our toddler on our laps, will ever be attainable. Back to Our Stories
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