Jennifer Young


I am a two time survivor of NF. The first case was in July of 2001. I started developing signs of infection the day after the cesarean delivery of my daughter. Each day I became progressively worse. First came the fevers and pain, then came the streaky purple-black marks on my abdomen with subsequent blisters. I was being treated at a Medical College, where I was assigned a medical student for my postpartum care. Due to the lack of knowledge of the student, I was not quickly diagnosed, and was almost released from the hospital. I voiced concerns that I felt too ill to take care of myself and my newborn daughter, so I was allowed to stay as an inpatient. I asked my student doctor for a second opinion, as my fever had been 104 for 4 days even with medication and antibiotics. Immediately after observation from another doctor, I was rushed to the operation room. I woke up to find much of my lower abdominal soft tissue removed. I had to have dressing changes 3 times a day, which were extremely painful. A few weeks later, I was put on a vacuum dressing which held my wound shut via suction. A month after the infection began, I was transferred to a hospital in Pennsylvania, my hometown, so I could recover closer to my family, and so they could care for my daughter. I remained on the vacuum dressing until mid September. At that point, I was able to resume regular bandaging of the wound. My wound did not completely close until some point in early November. The second case happened In August of 2003. During my pregnancy, I was very committed to a VBAC (vaginal birth after cesarean) due to my fear of having another surgery. Well, my labor stalled at 3 cm and I had another c-section. While suturing me up, my doctor warned me that this should be my last pregnancy, as my lack of tissues made it hard for him to sew me back up properly. On my second postpartum day, they removed my bandage from the c-section site. My skin was already purple. I was so scared. How on earth could this be happening AGAIN? I know what the survival rate of NF is, and I felt very luck to survive once, could I survive this twice? My doctor told me that it was not NF and prescribed antibiotics and told me I would be fine. On my third postpartum day, they again tried to release me, and I refused to leave, warning my doctor that some kind of medical action was needed. I tried to remain optimistic, and told myself that this must be a misunderstanding, and that I was just being paranoid. Signs of infection continued, including blisters. My doctor told me that I was mistaken, and that it was only swelling, and to relax. I tried to relax, but I noticed a blister had popped, and immediately filled back up again. I called the charge nurse and demanded referral to another doctor since my doctor would not take any action. Within the hour, a critical care surgeon came to look me over and interview me. He decided that he did not have the expertise to deal with my condition and transferred me to another hospital in the area that has an excellent wound/burn ICU. I was transferred to Doctor's Hospital and admitted to the burn/wound ICU that night. Immediately, a team of nurses and doctors inspected me and took a large variety of specimens to rush to the lab. While the lab was analyzing my blood work, I was sent to hyperbarics. I was rushed to surgery after my hyperbaric treatment. Luckily, due to my experience the first time, it was caught before I lost too much tissue. Unfortunately, I had no fascia in the area, so I lost some abdominal muscle. Two days later, I had another and final surgery. I underwent hyperbaric treatment for two hours, twice a day in the following week. My hospital stay was minimal, as my doctors knew I emotionally needed to be at home with my children. Luckily, I had a speedy recovery, and was able to return home and get to know my new little son. You might say I have bad luck, and I feel that way sometimes, but mostly, I feel lucky to have survived this twice. I feel somewhat stronger for having gone through this, but at the same time, somewhat weaker. I don't always feel like a whole person, I feel like I was invaded. I also sometimes feel upset that I can't have another baby. But mostly, I'm lucky that I have two wonderful children, and that they have a healthy mother to take care of them. I am planning on having a surgical sterilization as well as cosmetic reconstruction in the next year. I am very scared of having more surgery, but I'm not going to let fear rule my life. But meanwhile, I've learned to monitor skin openings like a hawk on my husband and children. And now, I don't take anything in life for granted. Thank you. I hope this story helps someone out there. I also wanted to add that I admire your site for educating the public. I just wish this would be more of a focus to educate doctors. I wouldn't wish this on anyone. Attached is a picture of my wound from the first case of NF.