Heartbroken

Why me? How did this happen? I did everything "right". I graduated from college. I got married. We tried for two years to have a baby. We planned. We wanted a baby. I lost 30 pounds before the pregnancy so that if I were to get pregnant the baby would be healthy. I did not drink, smoke or do any drugs. I wouldn't even take a simple pain killer if I needed one. I didn't drink coffee, or pop during the pregnancy. I stayed active. I worked up until they admitted me to the hospital. I ate really healthy because I wanted her to be healthy. I didn't want ANYTHING to go wrong. Go figure.

I was so angry. Angry at God for letting this happen, angry that my friends were having perfect babies, angry that I was the only one in my family to have a baby like this, and especially angry at myself. I kept thinking to myself, "Well Shannon, congratulations, you wanted a baby so bad and look now she's suffering because of you!" I hated myself. I thought that I would never forgive myself. Maybe if I never wanted a baby so bad. Maybe she wouldn't have to suffer.

I had heard about other sick babies before I had Erin and always thought, "I'm sorry that happened, but I'm glad it's not me!" I never would have imagined that this would happen. Sadly, this could happen to anyone. Healthy or not. It doesn't have to run in your family, it didn't run in ours.

Shortly after I was informed that they thought they knew what the diagnosis was, but would not tell us until it was confirmed. They did give us a "heads up" that she does not and will never have hair, eyelashes or eyebrows. Her fingernails are dystrophic, and her skin may or may not heal, but most likely her skin particularly on her head will always have continued erosions. They said they think that a piece of her DNA was mutated.

I was finally released from the hospital and went immediately to meet my daughter. When we arrived I was heartbroken. Seeing her in a humidified box, to weak to move or cry. All I wanted to do was hold and kiss her and comfort her. I could not touch her, no one was aloud to. My own daughter, who lived and grew inside me, who was part of me for so long....I couldn't touch. At the same time even if I was allowed to, it scared me to think that it would cause her more pain. Her skin was raw, bleeding and oozing. Her head, parts of her face, her neck, arms, legs, chest, entire back and bottom. The only part of her that body that wasn't eroded was her stomach. Her eye was swollen from the surgery they did to cut her eyelid back open. I kept thinking, "How did this happen? What did I do wrong?"

Everything that had happened to me didn't compare. All the scrapes, sunburns, bruises, surgeries. All the pain I had ever felt in my life could not touch the pain she was in. She, only 4 pounds 12.5 ounces, was barely surviving.