The First Time I Heard the Words “Epidermolysis Bullosa”

IMG_0023 (3)The entire C-section ordeal was strange. I was lying there with a sheet in front of me so I could not see anything, and I remember shaking like a leaf, afraid to fall off the operating table. I don’t know if this is normal or not, but thinking back, I had gone 48 hours without any sleep and 24 of them in labor and it was chilly in there, so maybe that had something to do with it. Nicky was adorable, and at first he looked 100% healthy. Doctor Abate kept Nick and everyone’s mood up by laughing and joking the whole time. My friend Kelly was there too, taking photos! The Doctor wanted the baby to be named Salvatore like him, and he even gave my husband an anatomy lesson at my expense. Here’s your wife’s “Uterus”! Here is her “Fallopian Tubes”! Really? I am glad I did not see it, it just sounds gross.

We did not know it at the time, but being born C-section, hence being induced early, was the very best way for Nicky to be born, and the best thing that could have happened to him. If he had been born vaginally they would have torn his skin off on his head and who knows where else trying to pull him out. He was certainly spared a lot of pain. Soon after he was born they showed him to me and he was absolutely perfect, he looked a lot like his big brother, but he had a much smaller mouth, had less hair, he was blonde instead of dark haired… and, most important of all, he was breathing!!! They took him to the nursery to run all the newborn tests, and everything looked normal at first except for his mouth. After they aspirated all the liquids from his mouth it started bleeding and losing its skin, but I did not know any of this at this point, I thought everything was just fine. They wheeled me to the recovery room where I would stay for a couple of hours, after which they put me in this very nice room just for me.

At 4 am the nurse finally brought Nicky to me so I could try to nurse him. It was pure bliss to hold my baby. I didn’t know where I ended and he began. All the worry evaporated, all my fears gone; at least for the moment. This was the first and last time I will ever remember thinking of him as a normal baby, even with his mouth problems. I could see there was something going on with his mouth, but I dismissed it, thinking it was leftover matter from the mucus he had from inside of me. I was cradling his little sleeping body in my arms and I was in heaven. The only thing that ruined the moment was my tiredness, I could not keep my eyes open, even with all the adrenaline of seeing and holding my baby! I felt like such a terrible mother. In my defense, I had gone 2 complete nights without any sleep, I was hungry, tired and I felt horrible. There were tubes attached to me all over the place and I was under who knows what kind of drugs, but I was at peace seeing my little Nicky sleeping. He refused to nurse, but who could blame him? That was the one and only time that they ever brought him to me.

Around 8 am the pediatrician came into my room to tell me that they had to put Nicky in NICU in an incubator because of the problem with his mouth. They thought it was a “Staph Infection”, “Herpes” or some rare skin disorder called “Epidermolysis Bullosa”. By then, in fact, he had started blistering all over the place. They told me that they had contacted a dermatologist and that he was coming up that same morning on his way to the Children’s Hospital in Phoenix from his office in Tucson. When he arrived it was around noon, he told me that he had seen Nicky and did some sort of test with the eraser from a pencil and he wrote down the name of the skin disorder. He mumbled something about us having a 25% chance of this reoccurring in another pregnancy and then he wanted my signature on a piece of paper to let them take a skin sample for a biopsy he could send to North Carolina for an official diagnose.

I had no family member with me in the room at that moment and I listened closely but to say I was speechless and in shock is an understatement. Unfortunately I was also in a fog, I was drugged, I couldn’t get out of bed on my own, I would throw up everything I tried to eat, and I still had not had a few good hours of sleep, so my mind was not clear, did I dream this conversation or did it really happen? I am not sure of what else this Doctor say or do, aside the fact that he was very interested in seeing pictures of Alex. I looked down at the folder he gave me where he scribbled the name of the disorder. Epidermolysis Bullosa. I could not even pronounce it. What the heck? I never heard of it. What is it? What happened to my baby? Where is he? Was he stolen and replaced by an unknown disorder?

When Nick came by just a few minutes later I told him to bring Alex’s scrapbook and gave him the name of this strange disorder, and he said he would look it up on the Internet before he came back to see us that day. To be honest, I thought it was something fairly mild; I had no idea, really. I had not yet seen these blisters and at this point the thought that he was alive was such a strong, blinding emotion, everything else was just a minor complication in comparison.

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