From Little Burned Girl to Burn Survivor
This is not just a story about a burn. This is the start of stories about my mother. This is also the story I judge people by. The rapidity with which a person asks me about my scars has replaced any other first impression I have from people.
I would not be able to tell this story without the help of my surgeons and grandparents. I contacted my surgeons years after my injury and surgeries, when I had started nursing school. My mother’s stories didn’t match with what I was learning, and I needed the truth.
When I was a 10 year-old girl, I did not make wise choices. One of those very unwise choices was to ignore multiple warnings against playing with flammable items. Some neighbor kids, my sister and I blew things up. We did it for at least 2 days. We were putting chemicals from the house into a Planters peanut can and blowing them up. At some point, someone kicked the can. I think it was my friend Terry, because I remember his shoe caught on fire.
My shirt, covered in fumes from the chemicals, and made of polyester, caught fire. I didn’t stop, drop and roll. I ran, tripped and fell. Someone (I think my sister?) grabbed the hose and sprayed me. I remember I said the Hail Mary.
I ran into the bathroom to put more water on the burn and my sister ran to our neighbor’s house. My sister had just turned 9, so her actions were remarkably well controlled for her age. My neighbor came over immediately. I remember she brought her aloe vera plant. Immediately, she ran and got her car, scooped me up and took me to the Emergency Room. Julia, wherever you are, thank you.
I was treated in the Emergency Room for my partial-thickness to full-thickness burn, which extended from my ribcage, across my left breast and neck, and burned off quite a bit of hair, but not scalp. I nearly lost my ear from infection. I was lucky. I remember getting a tetanus shot that made my arm ache forever, but I was crying and flailing, so I don’t blame the medical staff.
My doctors immediately recommended hospitalization, but my mother insisted on taking me home. My doctor wanted to send me to a plastic surgeon for reconstruction and grafting immediately, given the placement of my burns and my proximity to puberty. My mother refused.
That was July 27, 1997.
First: Why were we alone?
My mother and step-father worked. We had a babysitter who was the daughter of a friend of my mothers. I remember her name was Tammy, and I remember she watched television all day and paid no attention to what we were doing. I also remember hearing people say later that Tammy was developmentally delayed and never should have been tasked with watching children.
My mother did what she always did when something terrible happened, she called her mother. A couple of days later I was driven to Missouri with my sister and my grandparents took over caring for my burns until school started. I saw Dr. TJ. When he first took down my bandages and saw my wounds, he asked why I wasn’t in a hospital getting a skin graft. He reluctantly took my case when he was told my mother refused to let me have surgery.
I don’t remember much of that Summer. I sat in my grandmother’s cleaning shop, in the heat, in bandages, on pain meds. Sometimes I sat at my other grandmother’s house. They took turns. They changed my bandages. My grandfather devised a method of washing my hair without getting my ear wet, getting the chemicals out of my hair over a week after I was injured. That’s right, I went for at least a week after this injury without any kind of a bath.
Changing my bandages was hell on my grandparents. I screamed, I fought. My grandparents were told to wipe of the Silvadene cream, an antibiotic ointment from the raw burn, reapply it and rebandage it every evening. They did this the best they could. Sometimes they gave up or did as much as they could with me flailing, screaming, and at times hallucinating.
My mother had recently returned to her Episcopalian faith and was flirting with Catholicism at this point. She’d given me a scapula to wear. My scapula melted into my shirt and after the fire was out, I believed I would go to hell because I had burned the sacred pictures of the saints. I had nightmares and pain induced hallucinations about burning in hell. I had these nightmares for years after my injury. I would cry in my sleep, which would further break my grandparents hearts.
When school started, my mother had to come pick me up. I was sent to school in bandages. My mother was tasked with changing my bandages. She encountered the same problems my grandparents did. Eventually the doctor prescribed valium for doctors visits and dressing changes, but I don’t remember it helping much. I was still on Tylenol 3 for pain.
I lived with an open wound for months. My doctors tried again and again to talk my mother into surgery and she continued to refuse. They tried implanting a mesh called pigskin (not sure if it was real pig) over the open wound in order to give my breast a chance to heal beneath it. My breast began to heal. By this time, my neck and armpit had healed into horrific contractures, locking my head down and to the left, restricting the use of my left arm.
At doctor’s visits, I went through debridements, painful procedures where the doctor would pull dead tissue off the burn, and scrub it, while others held me down. I went through whirlpool sessions, which I was unable to tolerate because I felt like the bubbling water was going to boil and burn more more.
Second: Why Wouldn’t My Mother Allow Surgery?
Months went by. People at church called me the “little burned girl” and offered my mother help, and attention. Everywhere she went with me, people felt sorry for her and wanted to do things for her. I do not know for sure, but I think she took money from people for my care. Yes, my care was very expensive, but my mother had healthcare insurance through her employer, and I had Tricare insurance through my father. My healthcare should not have cost her much with those two programs. The Air Force would also have provided me with excellent burn care, but my mother refused to seek out their care as well.
My mother is also an animal hoarder. We always had at least 10 cats, kittens, dogs, and rabbits in the house. An immunocompromised child combined with that many animals is an accident waiting to happen, and on Halloween night, 1997, it did. A kitten jumped onto my chest, sinking it’s claws into my freshly changed bandage.
A few days later, I was massively infected. The pig skin and tissue under it turned from healthy pink to green. The smell was incredible. Years later, my doctor said seeing the infection felt “like a kick to the gut.” He told my mother surgery was required to save my life, and threatened to involve social services. My mother finally agreed, and I met with Dr. B, a plastic surgeon who specialized in breast reconstruction. He immediately asked why I wasn’t brought to him months ago.
On November 11, 1997, I underwent a resection of the burn, removal of my nipple, and reconstruction of my neck and armpit. I remember waking up and thinking “I’m straight.” My neck was straight for the first time in months.
My doctor prescribed physical therapy to rebuild my atrophied left arm. I don’t remember going to many appointments.
Getting the skin graft was the beginning to the end of so much of my pain. The raw, infected tissue was removed and covered with new skin. The worst part of the procedure was getting the skin graft dressing off. I had also lost many, many nerves. To this day, I have daily pain in my neck and breast, “phantom pains” from my missing breast. I will never breast feed. My right nipple is there, but too damaged to ever allow milk through. That’s a whole other rant.
I was fitted for a Jobst pressure suit to improve the chances of my neck healing correctly. Due to the position of my burn, on my neck, the suit was not very effective, and I still have a severe contracture that gives me neck, shoulder, and headache pain. I have tried to have reconstruction done, but have been denied each time by my insurance because the surgery is now considered “cosmetic.” My doctors have sent xrays, letters, talked on the phone, and been denied each time. United Healthcare. Cigna. Kaiser. I have given up.
I did have 4 additional reconstructive surgeries following my burn surgery. During these procedures, plastic expanders were placed under my skin. Weekly, I went to the doctor’s office and had saline injected into the expander. The first expander operation failed. In the Summer after my burn, my mother converted to Catholicism, divorced my first step-father and married my second. She literally introduced us to another man as “Daddy.”
She also sent us to a new Catholic school. Kids are cruel, and some of the kids at this school were exceptionally cruel. Given the weight of the expanders on my fragile skin, I was not supposed to lift. I was required to share a locker with another student, and was given the top shelf. He would frequently throw my books down on the floor. Eventually, the incision holding the expander dehisced, opening up. The next day I had emergency surgery and the surgeon attempted to do a reconstruction, but there wasn’t enough skin growth. Another set of surgeries was planned, and my surgeon insisted I be kept out of school.
I stayed at home alone during the day, except for twice a week visits from a teacher. It was during this time my love of science began. My teacher quickly noticed I loved science, and encouraged me to complete the book. I don’t remember her name, but my teacher was with me for 2 years off and on.
The second reconstruction was successful, but we began to run into “cosmetic” surgery refusals from insurance companies. My grandfather is a Mason, and used his connections to win me an offer of help from Shriner’s Hospitals. The only catch was that I would need to stay in Cincinnati, Ohio for a month. I was now 14. My mother refused to allow me to go to Cincinnati unless someone paid for her wages and for her to stay in Cincinnati with me. My one chance to receive reconstruction was gone.
I didn’t originally know half my breast was gone. I had fatty tissue and a firm scar, so I had what looked like a breast, but once I was in my 20’s, it became obvious something was different. I had an X-ray that showed I had one full breast and one half breast. I was never told about the removal of my breast. At this point, I was in nursing school, and contacted my doctors.
They told me the above story. Since learning the truth about my burn and reconstruction, I have been unable to be civil to my mother. When I confronted her about her choices, she first denied the doctor’s stories and then just said “Well, I’m a bad mother.” My decision to cut her out of my life came a few years later.
Today, I’m okay. I get annoyed when people ask me about my scar, unless it’s children. Then I tell them I played with matches. I finally learned to say “it’s not your business.” Someone’s got to be a cautionary tale. I tried going to a burn survivors support group, but I really didn’t fit. My burn was 15 years old by that point and while I don’t like my scar very much, I’m very used to it.
My decision to enter nursing versus medicine was partially based on my experience with the nurses in the hospital. It was not my doctor’s fault, but I associated them with pain and terror. The nurses were gentle, and brought pain medication. They spoiled me. Combined with my interest in science and other life events, nursing eventually became an inevitable choice.
That’s another story for another time.