Book Excerpts

Losing Alex

My mother, my husband and my best friend Kelly were all there to witness the birth. The silence in the delivery room was deafening. You could hear a pin drop. The baby had arrived on Wednesday, March 1st, 1995, 4:29am. Alex was 19.5 in long and weighed 5lb 13oz. The Doctor told me that Alex had most likely lost some weight since his in-utero demise, and that the cord was around his neck, which made it obvious it was a cord accident... well, maybe. There was no certainty in any of this. I was very upset at how his skin was peeling off so badly anywhere, but nobody gave it a second thought. They told me it was normal. Of course this was far from normal. There was no way they could have known about EB back then considering the rarity of the disorder. The only way to diagnose Epidermolysis Bullosa ...
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The First Time I Heard the Words “Epidermolysis Bullosa”

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 ...
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The Importance of Bandaging

In late October 2008 something happened that brought back a flood of memories of the reason why I bandaged Nicky so much and why I believed that this had made such a huge difference in his life. I took Nicky to hydrotherapy at CHLA and there were four nurses that told me that Nicky was their 3rd or 4th EB child they did that week. They were going to take off all his bandages, give him a bath, take pictures, assess him, call the Doctor so he could have a look over, and then re-bandage him. I was happy if only because I didn’t have to do it for once and I was always open to suggestions. After all, even though I do consider myself an expert in my child’s EB, I am no nurse. I told them to bandage him like they wanted to and felt appropriate. Right off the ...
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