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 it is through a skin biopsy, and they would need to suspect EB to send it to the correct lab. It would not be until Nicky was born 21 months later that every Doctor imaginable was all of a sudden extremely interested in seeing photos of Alex. “Oh yeah” the dermatologist that diagnosed Nicky and Doctor McGuire at Stanford said to me unequivocally, “Alex for sure had EB.” How EB could have caused his demise though is still a mystery. Doctor Marinkovich at Stanford told me that many babies with EB are indeed stillborn, but could not tell me why. At this point however, in the delivery room, we were completely oblivious about EB and would remain so for nearly two years.
My husband and my friend Kelly took videos and over one hundred photos. I don’t remember most of them being taken; I was too much in shock and in disbelief to think of mementos, even though I was the one to ask them to make sure they did it for me. The time we spent with him was too short in the midst of the shock and trauma of the birth experience to etch his beautiful face in our minds; we needed these photos for later. I was unaware at the time how important these photographs would become, these are the same tangible memories that would become crucial in my grief process. I am ever so grateful these pictures exist; I have made wonderful scrapbooks with them. The video, however, has proven to be extremely painful for me to watch over the years. Still, I am glad I have it and will guard it with my life forever.
The love that followed the birth of my child exceeded my greatest expectations. It was still a wonder to give birth to him, and when I first saw him I still smiled. What a way to find out what a mother’s love is all about. I just held him in my aching arms and kissed him tenderly. Holding him affirmed his realness to me. He was real. He was beautiful. I felt his presence. I knew his soul was in the room, somewhere, looking down with love. The Nurse took the time to explain every little detail of his body, making sure I knew he was perfect. He had a cute little upper lip that opened up as if it was waiting to be fed, but the nose was dripping blood. I was overcome with love and helplessness, joy and grief. The potency of my emotions surprised me. For the time I had him near me or in my arms I examined every inch of his body, gently touching him and kissing him. I looked over at my husband while I was holding Alex and he was inconsolable. I watched him break down and sob for our lost baby. I am not sure I ever saw my husband cry before. It devastated me.
Somehow for those few hours I spent with Alex I couldn’t cry. I was in such an elated state to finally see him, comparing features with ours, and I was so proud. I would have done anything to hear him cry, anything!! I was in this weird state where you want to take it all in, the emotions too intense to cry. Tears would not come until later, and they would flow like a river.
Something really strange happened while I was holding my baby. All of a sudden I was no longer scared to die; somehow, all those feelings vanished. There was only peace. I will always hold on to those few precious minutes that I got to hold him. They will last with me forever.