After 23 hours of labor, Kiira Faith was born on 10/12/14 at 6:14 pm, weighing 8 lb 3 oz and 20.5″ long. Immediately we noticed blisters on her body and we were told she would need to go the NICU. The next day we learned Kiira has a genetic skin disorder called Epidermolysis Bullosa. It manifests itself as blisters on the skin wherever there is too much friction. She will have it for life but with proper care and treating her gently, we can avoid the blistering as much as possible. She has a lot of blisters now because of the birth so they are keeping her wrapped up like a burn victim while she heals. Once she heals we can bring her home. They are doing genetic testing to figure out which kind and how to proceed with care based on which type but that takes 4-8 weeks and then we will meet with Stanford specialists.
We have been very busy with Kiira as we are learning to tend her wounds, even the staff is learning as we go. The time she will be here is unknown as we take each day at a time. She has no infection so we are thrilled about that but new blisters appear every few hours. Dressing the wounds takes hours and will be a daily task, in addition to feeding and caring for a typical newborn. Kiira is incredible tho– she hardly cries and sleeps thru most of it. However, we’ve read its a life of pain, however long that life might be.
We had no clue what this disease was and no one in our families had it that we are aware of, but one or both of us are carriers. We are devastated, but the joy of having Kiira look at me and seeing her sweet disposition is comforting.
Please keep Kiira in your prayers–pray for healing, that she won’t be in pain, and for strength to endure this every day.