|Kristy Townsend's Survivor Story|
My name is Kristy Townsend and I'm from Bel Air, Maryland...born and raised. It all started on a crisp October night, I was several months into my pregnancy and my water broke. My husband and I were looking forward to welcoming our new born son. His due date wasn't until December, so we were excited, anxious and worried all balled up. Not knowing that extent of the emotions and experiences we would be going through. We went to the local hospital. I was started on I.V.'s and was administered the first of three shots given for premature births, to help the development of the babies lungs. We were told that they couldn't handle a baby of Kaleb's gestational age and we were sent to a different hospital. We were transported and admitted, where I would spend the next week on bed-rest. A week to the date later, I had been running fevers, so they decided to induce my labor for Kaleb's safety and my own. It was a long thirty-six and a half hours later when, after tremendous efforts, it was decided very quickly that Kaleb was going to have to be delivered by a c-section. We wanted to deliver naturally, but I wasn't dilating and Kaleb had gone into distress. I was shaking uncontrollably, and was experiencing immense pain. Of course nothing as to what I would experience just a few days later. I remember getting wheeled into the delivery room, going through areas of construction. The delivery room that I was taken to, we were told, was an emergency room, and because of the construction the c-sections actually were on a different floor. But I had to go/which I did. But that this room was for emergencies only.
I had two epidorals, which either actually worked. The only thing that it did was paralyzed me from my waste down. I could, however, feel. I couldn't move myself onto the delivery table. The anesthesiologist picked me up to help. He then told me that "this might burn a little bit". Burn wasn't the half of it. I could feel everything! I had screamed so hard I busted out the veins around my eyes. To even try to describe such pain, brings back memories that sicken me, even through my bought with NF.
After the c-section my son had to be sent to a different hospital, they told us he had to have an immediate surgery, for his Tracheal Esophageal Fistula (TEF). So he was in one hospital while I was still at another. I had to stay at the hospital I delivered for a few days for observation, since I was still running a low grade fever that was baffling the medical staff. I was finally sent home, and couldn't wait to see my son! I did get to see Kaleb before I had to go back to the hospital for a couple months. I wouldn't see Kaleb physically again for another three months.
I noticed when I was home that I had some fluid leaking from my caesarian site. I remembered that the discharging nurse said that was one thing that could happen, so I didn't pay much mind to it. I did call my sister who is a nurse and told her, she said for me to call my OB/GYN doctor, and I scheduled a visit for that next day. I had been sleeping on the couch in the living room, since I was still in so much pain and could hardly move. The medication I was on (Ibuprofen) wasn't helping, and I kept feeling really hot and sweaty. I didn't sleep well through the night, from the sweats and pain. When I did wake up in the morning, I went to get up from the cough to use the bathroom, and flooded my clothes with fluid from my abdomen! I immediately called my sister who rushed over. This is pretty gross, but it's the truth. I was sitting on the toilet in the bathroom just letting the fluid drain, it was one of the most disgusting situations I have ever experienced! My sister immediately called my doctor who wanted to see me right away. We went into the office with me gushing everywhere, and the stench from the fluid was repulsive.
The doctor then told us what he thought it might be and instructed us to return to the hospital where the initial surgery took place. So I remember leaving, getting back into the car and heading to the hospital. I don't remember arriving at the hospital or being admitted or anything. I do remember going into a hospital room, I went back to the same place I had been, just in a different room in the labor and delivery section. I was treated for an infection. They tried to take out the stitches, which was another painly remember able experience. All the while I was being treated the wrong way, and hearing other stories and tests that had been done I know wonder why I didn't have those test too?
They (the medical staff) felt confident that the medicated packing of my caesarian site would resolve the infection, that one doctor said I would be able to go home that next day. In fear I called my sister. I was still in way too much pain. She was livid and came back to my rescue. I refused to look at the site thru ought the whole process. My mother noticed black skin that the doctors didn't comment on. My sister noticed how the redness looked like it was spreading to my back, where we were told that was just from me laying for so long. It wasn't until a doctor tried taking out the last two stitches when my mom stopped her, pleading with her not to let me endure this much pain any longer. She agreed, and returned the next day with another doctor. They both just looked at me and he said what he thought it was, that he had only seen one other case. That's when I heard it for the first time. Necrotizing Fasciitis.
I was immediately taken to the prep-room for surgery, where it was just my mother and I. Swarms of doctors would engouge us telling us their sceneries and speaking to my mother and not to me, which I was getting offended by. I kept hearing that "she will die". This struck me as unbelievable. I was there just to deliver our baby, and now facing death? I looked at my mother for reassurance that this was all some sort of twisted dream, and asked her what I had done to deserve this, why? With tears in our eyes she replied "Kristy, God didn't create these germs, people did. He didn't do this to you, you have to grab onto your faith and He'll see you through". I took two deep breathes and felt a sense of peace.
Then the doctor that would be actually performing the surgery and follow me through arrived. She introduced herself and explained what they were going to be doing and what they would be looking for, with out the comment "she will die". Which made me feel better to have someone on my side, fighting for me. As I was getting wheeled away, I waved to my mother who was in tears, holding all our belongings and just sobbing through her brave attempts to wave back. I yelled back to her "oh-mom, do you remember how to get back to the waiting room", her tears became more intense as a nurse escorted her out. I was then taken to the operating room, where there were people standing all around the room. The operating table was cold, and I was shaking with emotions. They were prepping me for surgery, they put a cap over my hair, we made polite jokes until the anesthesiologist asked if I was ready, placing the gas mask over my face asking me to count back from ten... of course I think I didn't get to eight and was out.
The next thing I remember was fighting with a nurse. I had pulled out the tube going down my throat and was fighting with her as she was trying to put it back in. I remember faintly voices and blurry faces. When I woke up, it was almost two weeks later. I had a total of three surgeries, and debridement (where they cut away the black, dead skin). I still didn't really understand or want to know what was going on yet. I remember waking up to my mom. There were pictures of my son taped to the wall to my right, and a picture of the Cinderella Castle from Disney World plastered to the ceiling above me. I don't remember much of the conversations, I think my mom was hesitant on telling me anything. I remember my husband rushing to my side, placing ear phones on my head insisting that I listen to a song he wanted me to hear and holding my hand. He had been in Virginia when he heard the news that I was going into surgery. He rushed back and to try to describe the horror that my family experienced wouldn't be fair, as I wasn't there. But I was told of the stories and how my family and friends were all in the waiting room, for support and love. I know I couldn't have gotten through half of what I did without my family and friends, especially my immediate family, my husband, sister and parents!
I kept asking about Kaleb, who had to undergo many surgeries of his own, being premature he had to have the TEF surgery, he was on oxygen, then he was also born with a small stomach and enlarged liver and was diagnosed with reflux disease, so eventually they placed a feeding tube. He underwent a couple more surgeries and remained in the NICU until February 2003. I was at one hospital and Kaleb was at another, my husband was torn between them both, trying to work and visit both of us in the evening, and ultimately spending the night some times with me at night, having to wake up and go right back to work was torturous. My husband is a saint in my eyes. I was still in the ICU recovering. This is where I had to experience the first of many dressing changes...very painful. The anesthesiologist said that he administered enough pain medication to relieve the entire section of the ICU. That much pain should be suffered by anyone. They were using black sponges and a suction device for my healing process. The black sponge was held in with tape and special dressings and had to be changed twice daily.
I think a day or two later I was promoted to the SICU, where I was in the burn unit, since they didn't know where to put me. I was in an air rotating bed, and visited frequently by family and friends. There was hardly a time when I was left alone. The split second I was, a nurse attending to me gave me information of what I had been diagnosed with - NF. As I read the information in horror I began to cry uncontrollably - when my family was re-entering the room. It was hard to believe that all this was happening to our family. But we were all thankful with the odds we were given and that I had made it this far!
We were taping and recording my voice to take to Kaleb who was still in the NICU, and they (family) would bring me video tapings of Kaleb. It was the hardest thing to deal with, not that my stomach was gone, or that I had gone through, but that I couldn't be with my son, and I couldn't be with him through his surgeries and experiences in the NICU. I cry even now, over a year later, just thinking about that. A day hasn't gone by that I haven't thanked every single blessing that Kaleb and I are together now and that our family has experienced and made it through and "weathered" these rough times. It wasn't until a week or so later that we decided that I could no longer go through the pain and agony of the dressing changes with the black sponge and suction device. That I was healing so well and fast, that my skin and tissue had been growing into the black sponge. Pieces had to be cut out, all the while not receiving adequate pain medication or management. I was told a couple times to just deal with it. Finally it was one wound specialist that insisted I could not go on in such pain. I was then converted to wet/dry packing. Where it took 18 large hospital gauze (the big rolled up kind) to fill my stomach. The plan had been at that time that I was going to try reconstructive surgery. In the process I developed a blood clot in my right leg which prolonged the surgery. I was sent home, dressing changes and all, in the beginning of December. The doctors were trying so hard to get me home before Christmas.
I was confined to the couch and had dressing changes twice daily, which my husband ended up doing. When I first came home I was being followed by a nurse, who was checking on my site and administering the injections for my blood clot. It was decided then that I had to wait six months until I could attempt to have the reconstructive surgery. It's been over a year now and I'm still waiting. I had to go to the hospital every month for check-up's and follow-up's with the surgical teams, the blood doctor and the plastic surgeon. This wasn't very comfortable since I still had a massive wound and hurt like (you know what) to move anywhere!
So...through all this my family and I have definitely become closer and stronger. The experience has dragged us through the roughest of times, the worst of experiences, but we still have come through smiling and laughing. We were raised that laughter is the best form of medicine, and I truly believe it. I had tremendous support! But through it all my sister was time and time again my saving grace! She was the will and drive that kept us all alive, and me literally! How I have healed together is painful, I still have a hard time sitting and standing for long periods of time. I can't lift and have to be careful when I go to stand. I easily hurt myself by twisting or moving the wrong way. And with a 14 month old, we're pretty active. Kaleb is doing well and progressing. He still requires little oxygen, and has a trach to help him breath. He still had his j-tube (feeding) to help him get proper nutrition, which isn't an issue anymore. He's growing strong and everyone is extactic with his achievements and progress he's made! He's our little blessing in himself!
My husband is still very supportive. He has to constantly reassure me that I don't look freakish. We both painfully decided not to have any more children, one because of the condition it has left me in, and two that we NEVER want to experience this again. Not that we would, but it's not a guarantee that we wouldn't either. We did resort to counseling to help us get through some emotions and expressions we had a hard time dealing with. When I first came home from the hospital I think it hit the worst. There were times I couldn't move from crying. I just couldn't get a grasp, or gasp of air. I would just curl up (even though it hurt) and cry. Kevin would always be there to comfort me and to tell me that it will be o.k. even though he himself didn't really even know.
It has changed our lives forever, where this should never have happened, and no one should ever have to experience the things that we have, we have survived. I do have pictures, they were taken while I was still in the hospital, approximately a month after the initial surgery. Please feel free to contact me with questions, comments or concerns. It's best to get things out, and it's a step in the right direction for healing.
Please note: The following linked images are very graphic and may be upsetting.
Bel Air, MD USA
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January 31, 2004